Shared journeys to different destinations

 One thing that has struck me throughout the emotional ordeal of cancer has been how my wife and I are intimately connected on our paths but must face very different end points. Now I consider this issue more deeply, I realise it is not an uncommon aspect of life. Still, I am not sure that makes it any easier to handle.

 

As soon as my health issues became apparent, my wife and I resolved to face whatever lay ahead as a team, supporting and caring for each other and making decisions together. After all, that is what life partnerships are for. There are times in life when we are in acute need of emotional support, and that is when those of us in loving partnerships have an advantage over everybody else. During good times, we might have a tendency to undervalue this enormous asset. If we are smart, we invest a lot to ensure that we are there for each other when we really need help. I cannot imagine how I would be coping emotionally right now without my wife by my side.

 

The issue is that, while we can face up to the challenges of today as a unified team, we must also prepare for very different futures, and our individual journeys have to reflect this fact.

 

In the phase we have endured so far, while I have been healthy, our emotional needs have overlapped quite well. We have been able to help each other move past anger and bitterness and have been able to embrace sadness and the loss of our anticipated future joy together. We have each had to come to terms with our own fears but have been able together to reach thankfulness and peace, with a large part of the thankfulness being for each other.

 

However, like the man in Robert Frost’s wood, our paths will soon diverge. I have to reach acceptance with the prospect of death, and of the pain and suffering that will no doubt arise once the illness becomes more severe. In my wife’s case, she has to face becoming a carer, perhaps for an extended period of time, and then to a life without her anchor.

 

We have both signed up for therapy, and it does not surprise me that we have been paired up with professionals of different expertise, and advised to stay apart unless there is a particular issue we feel we can address together. My wife’s therapy will initially focus on the caring aspect, which seems to make sense.

 

The caring aspect became more real this week after a further two night stay in hospital, this time for an operation to remove as much of the tumour as safely possible, with radiotherapy likely to start next month. This was a larger, longer operation with a longer expected recovery time, not least because I am told that two seizures occurred during the procedure. The main issue that arose were additional visual symptoms, something else the surgeon warned was likely. The original visual field symptom seems to be a bit better, but I am experiencing frequent double vision and some apparitions like a curtain or various cars in the sky. It is very disconcerting. Apparently in some cases it goes away again fairly quickly but in other cases can linger. If it stays it will take some getting used to. In better news, I have found myself able to read quite competently over the last couple of days. But one way or another I might need a bit of help with some tasks and emotional support in the coming days, and I have certainly been quite tearful, for the first time in a while. So I am grateful that my wife is so determined to rise to the task at hand, though the last thing I wish is to burden her.

 

The journey to different destinations is somehow universal in life partnerships. We vow to travel together until death do us part, and most of us envisage an end literally together. But life has other plans, and usually somebody has to go first, on occasion at a time when the survivor is still quite young and healthy.

 

Most of us resist conversations about how we would cope if widowed and what we would wish for our surviving partner if and when that happens. Perhaps this is a lost opportunity. What seems to happen a lot in long and happy marriages to old age is that when one partner dies the other tends to lose some will to live and follows behind quite quickly. That way many productive final acts may be lost. I am sure I am not alone in fervently wishing that my wife can recreate a fruitful life in the time she might well have if the cancer kills me at some point, whether in months or, as we hope, years.

 

I can wish this. To an extent I can help her frame it and plan for it, as indeed we started as soon as we received the diagnosis. We have taken steps financially and been quite practical about it, and I hope that continues.

 

I fear though that there is a trap lying here, represented by a desire to micro-manage from beyond the grave. A lot is written and shared about legacies and final wishes, but in the end our job is to prepare the ground, leave plenty of space, and get out of the way. The survivor is probably not doing themselves any favours by building shrines and memorials either. Life is for living.

 

So my favourite management advice about getting out of the way may apply to grieving the end of a happy marriage as well. And I can also argue that it applies just as much to another critical life task for most of us, that of parenthood. Our job as parents is to give our child a solid start loaded with skills and hope and optimism and love. We all fall into the trap of micro-managing our children, such is our desire to protect them and to make them happy, but there comes a point, earlier than most of us care to accept, that getting out of the way is a smarter plan. One of the things which affords me the most acceptance of the situation I now face is the belief that as parents we have successfully passed this important milestone with all three of our children.

 

The coming weeks, months and maybe years will give us practical experience of a shared journey to different destinations. I hope we can manage it with love, care and gratitude, right until the moment of separation. No doubt there will be mistakes along the way, including denial, lack of acceptance, micro-managing and shrine- building. None of this is easy, which is no doubt why we avoid the topics involved so readily. But I believe we owe it to each other as acts of love to do some preparation for what is almost inevitable. Some live longer than others. We can celebrate what we have had and what we can still have, without sliding into unhealthy places. I pray that this time will be given to us and that we both use it wisely. I believe we have made a strong start, but accept that this shared journey to different destinations will surely be tough at times.    

Conversation Starters

This week my doctors finally reached the end of the various paths that might have lead to a more specific diagnosis, or at least progressed far enough to judge that the time had come to stop investigating and to take some action. The tumour is growing and we have been lucky so far that its symptoms have been mild.

 

Strangely, this change caught us off guard. We had become rather comfortable in this phase if a phony war, trying to pretend to be patient while actually rather enjoying the peace and false comfort of regular lives. So when the doctor this week talked about an intensive course of radiotherapy and the possibility of further surgery, we did not really believe how imminent this might be. That changed when a nurse from the surgeon’s department called me yesterday and told me I was booked in for an operation next Thursday.

 

This news should not have been a surprise at all, but it brought all sorts of supressed emotions to the fore, and for some reason this happened to my family more than me. We thought back to the previous biopsy surgeries, the Russian Roulette analogies, the hurried preparations and goodbyes, and the unwelcome visits from medical professionals bearing bad news. At least this time in MSK I expect the communication to be better, and to spend more time in something resembling a bed in a ward rather than a corridor cramped with refugees.

 

A part of the disappointment is the confirmation of a reality we have always known but somehow hoped might disappear. Nobody has tried to disabuse us of the notion that this is a high grade growing malignant tumour, and what the typical outcomes for such things entail. But while the investigations continued and while the symptoms have stayed stable, there was a space in our brains for irrational hopeful thoughts.

 

We should be happy. We want to fight this tumour and to enjoy more happy months like the one we have just had, and we can’t expect our luck to continue without some sacrifice. Bring it on.

 

This phase of feeling very well but under mortal threat has had some unusual features. Most obvious has been the magnification of all emotions, creating an intensity of experience that is remarkable, no doubt enhanced further by the effects of the steroid medication. We read about experiencing every day as if it is our last, and that has certainly turned out to be the case for me during this period.

 

Part of that has come from reacting to how others have perceived me. Many have been thrown by not finding me sick, and for others who have encountered me multiple times this has entailed a humorous progression. The reality undermines assumptions. This started during my first hospital visit, when I was wrongly assigned red socks upon arrival, a code that I now know indicates a patient in acute danger who must be watched closely at all times and not permitted to do very much on their own. It took the medical staff several days to realise that I was no such patient, and their attitude moved very gradually from a sympathetic caution towards accepting my offers to help on the ward.

 

The same has happened with others, even with my wife. I am at a slightly increased risk of a catastrophe, and should not be reckless, but it is also healthy for me to live my life as normally as possible, even to the extent of swimming, and certainly to include doing the shopping and washing and general household chores. The result has been a sort of hybrid arrangement at home, where by now I can contribute fully to the work, but where if I am away from the home I am expected to sign in hourly via whatsapp to confirm that I am still OK. I guess it is a sign of love and I am happy to play along with the regime even if it seems inconsistent.

 

Most interesting, and most rewarding, has been how people talk to me. I no longer make such a point of telling everybody about my illness, but one way or another many people know something serious is going on in my life. That can act as a conversation starter.

 

It doesn’t work with everybody. One slight surprise is that medical professionals tend to avoid such conversations. They are trained to deal with physical sickness, and when I display the opposite, they are flummoxed and clam up. Even if I offer an invitation by referring to my emotional upheaval, the response is usually something that deflects conversation. Perhaps they hear too many stories and need to preserve their own sanity. Perhaps they are cautious about overselling their skills.

 

The other groups that are usually clueless are young people. Typically, they have no idea what to say so they say nothing, which I guess is not the worst response. Even so it might be a lost opportunity to build some life experience that might be valuable one day. But the Instagram generation does not generally seem to have the skills to respond to the situation.

 

But many people have a lot to say, and by and large I find this welcome. In most cases my situation seems to induce people to turn the mirror on themselves and to share their own stories and feelings. Two priests have shared the sacrament of healing the sick, and in both cases I have learned a lot more about them as a welcome consequence. The nuns at the home where we volunteer have displayed their wonderful humanity and wisdom, and the comfort they have offered has been deeply helpful, even when I struggle to accept the doctrinal side of their input.

 

Many people have been anxious to share their own medical stories. These stories have various themes, and the purpose of sharing ranges from trying to give me comfort to talking through some anger or confusion. Many people have suffered misdiagnosis, but often with the pleasant consequence that a projected early death did not materialise. I can conclude that medical science has come forward a long way but still has further to advance. Given what I know for sure about my own condition, that only offers me a limited reassurance, but I do not rule out anything. I also conclude that going too deeply into the medical side can be a bit of an unproductive rabbit hole.

 

The more interesting stories so far have been the emotional ones. Sometimes I have been able to steer a medical story towards its emotional aspects, and that has usually made it more valuable for me and, I sense, for the narrator too. But many people have surprised me by sharing their emotional stories without prompting from me, and I feel privileged whenever that happens.

 

One lesson for me is often I will underestimate the depth of the experience of others, and how such experiences can help to guide our own philosophy. Many people who have lost a loved one in a cruel way, or lost a child, or somehow recovered from a near-death medical condition, and these people have found their own way to cope. Central to this often seems to be a more accepting attitude to the prospect of their own death, and that revelation has invariably helped me. The stories are not always comforting, since some people seem to almost will their own death as their solution to their grief, and I certainly would not wish that attitude on anybody, certainly nobody close to me. But there is still a cleansing power to such raw emotion.

 

One theme from the people sharing these stories seems to be calm acceptance. It is hard to imagine such a refreshing change in philosophy coming about in somebody consumed by anger or bitterness. In my own case, I am continuing on the quest towards finding acceptance and peace, and helping my family along their parallel journeys towards those same goals. The experiences of others can only be helpful along the path.        

Altered Perspectives

 By now I am getting used to living with a new time horizon. It has some surprising benefits. 

A few months ago I suppose I looked at things across a horizon of twenty or thirty years. When I read the obituaries of rich white men, most of them seem to last into their nineties nowadays and I guessed that would probably apply to me as well. That changed overnight with the cancer diagnosis.

 

Our timeline is still completely uncertain, and we still don’t have a stable diagnosis, leading the doctors to avoid any questions about how things may develop or how quickly. But a bell curve with a mean of twenty or thirty years has surely morphed into one where years have been replaced by months or even weeks.

 

It has surprised me how quickly I have been able to come to terms with this new reality, and surprised and impressed even more how my wife seems to have been able to achieve the same. One key to it seems to be our emotional journey.

 

We decided early on that anger and bitterness were not going to take us anywhere helpful, and we were able to move past those emotions very quickly. Sadness and fear are helpful and can be embraced, but then placed into a perspective that stops them dominating our thoughts, except on days when these emotions become triggered. If we can move past those, the next set of emotions are more positive, including thankfulness but also happiness and joy. I am currently doing daily homework tracking my emotions for my therapist, and somehow I find that happiness is dominating my daily scribbles.

 

The final stage involves acceptance and peace. These were harder for a time, mainly because of the emotional supercharging of the steroid medication. But this week I was tapered down to 2mg per day, and that seems to have done the trick, at last restoring my energy to within more normal parameters. Long may that last.

 

My desire for legacy projects and daily closure of activities has not abated, and I am comfortable with that, understanding what may lay just around the corner. I find great joy when achieving a permanent simplification of a part of my life. But I have noticed a few other interesting changes in my attitudes as well, ones that may have relevance to people in less extreme situations.

 

The more trivial changes are not really surprising. I find it easier to treat myself. With a twenty year time horizon and living in the USA the spectre of possible diabetes is always present, leading to many trade offs of exercise and diet. Strangely, in the new situation swimming has changed from a chore to a pure pleasure. As for food and drink, my taste buds have become more active, and diabetes is no longer so scary a prospect. I went a full year without buying any Trader Joe ice cream but that sacrifice does not seem so valuable now. I will often treat myself to a second cup of coffee. If I fancy a pain au chocolat or a sourdough loaf from the French bakery then I will go shopping for them. We have got into the habit of eating out more too. Many places in Manhattan serve a Sunday brunch, and I no longer seem to resent forking out $25 for some eggs that I routinely prepare myself for breakfast for a few cents.

 

More interesting may be my attitude to the news and current affairs. I devour The Economist as avidly as ever, but I find many Newshour stories less interesting, especially those that just seem to complain about Republicans. But I notice that since my diagnosis I feel much more positive about the news. It is possible that November was simply a great month for good news, but I am not sure how much this is about the news or how much about me.

 

Netanyahu aside, populists had a terrible November and it is possible that the tide may be turning. Bolsonaro lost, the EU is slowly corralling Orban, Modi is showing a more balanced side, and, most visible of all, the Trump wave is finally over. Decisive in that is the abandonment by Rupert Murdoch, a blow from which there is no recovery.

 

The climate summit was not a great success, but 2022 will go down as a decisive year in any case as a bi-product of the Ukraine war, because Europe’s lead in finally weaning itself off Russian oil and gas will be emulated elsewhere.

 

Then there is Russia and Ukraine. Putin is coming under more and more pressure at home as his erstwhile allies start to desert him and facts on the ground stack up to undermine his narrative. He is looking for a way out now, and NATO continues to play the war with impressive expertise, adding confidence to how the endgame can be managed.

 

The UN has had a great few months as well, supported ably by the US State department. Human suffering in many regions can be mitigated by the grain and fertiliser deals in Ukraine and by fragile peace deals in Ethiopia, Yemen and elsewhere. Tony Blinken could be my candidate for statesman of the year, but what we are really witnessing is the slow return of competence to US foreign policy after the willful destruction of the Trump years.

 

Most interesting as usual is China, and here Blinken has blotted his copybook with the unjustified and counter-productive technology sanctions announced a couple of months ago. But even here I am delighted to see the rest of the world pushing back effectively, starting with Olaf Scholz and followed up at the G20 by Indonesia and other Asian nations. Perhaps this destructive new cold war can be averted after all.

 

China is certainly playing its part. Having rescued the world from the financial crisis in 2009, the last month has seen the beginning of a repeat performance, with decisive moves to fix the broken property market and now the timely moderation of Covid policies. I sense the 2023 recession in the rest of the world may be shorter and milder as a result, and perhaps the US will yield some ground back to China as a reward.

 

The Economist special report in October about China’s goals was the best journalism I have read in 2022. What shines through is the overall goal of equitable development. Having lifted half a billion out of poverty in one generation, all policy is designed to take out another half a billion in the next generation, while helping to develop other countries at the same time. These goals are pursued by an efficient civil service that shows the capacity to learn.

 

Compare this with America’s goals. The most powerful people in the US are probably Rupert Murdoch, Elon Musk, Jeff Bezos, Binyamin Netanyahu and some hedge fund managers. Their goals are overwhelmingly to manipulate public opinion to retain unjust power and wealth. They are top dogs and want to stay that way, just as colonialists have throughout history.

 

One of these systems is called communism and the other democracy. Each has its flaws. The Chinese make mistakes and are unjust to their own minorities. But if you start from their goals and their ability to execute, I think I will reluctantly back their approach over the broken alternative offered by the US – 2022 and Blinken notwithstanding.

 

This sunny view of the news is surely biased, and I wonder how much comes from my generally altered set of perspectives. It is easier to be relaxed about climate change when you don’t expect to be around to witness much of the damage, and it is easier to feel less concern about populists when there seems less danger of being alive and suffering under their spell twenty years from now.

 

I also wonder whether the emotional journey concerning my disease has had a spin-off benefit in my attitude to news. What are Murdoch and the others trying to instil in us? It starts with anger and resentment, and moves from there to sadness and fear. These are exactly the emotions that I am working hard to move past, and perhaps we can all try to take the same attitude when confronted with populism. Life is certainly sunnier when we can reach thankfulness, happiness and even peace.

 

Medical science is a good place to start when looking for something to be thankful about, and you can find stories in the (non-populist) news to engender a torrent of thankfulness.