The Cursed Cure of Steroids

 Another week has passed and I still have no stable diagnosis and hence no treatment plan or reliable prognosis either. On Tuesday I will meet again with MSK and by then they will have had all the data for eleven days and might be ready to make some proposals. Feeling fine in the meantime helps us to retain the necessary patience through this phase. Actually most of the time I feel better than fine, amped up for action (and then suddenly unable to keep my eyes open and requiring an immediate nap). We have established the reason for this weird state – it is the steroid medication I am taking.

 

I have some family history of steroids that I only start to understand now I am experiencing them myself. The last fifteen years of my mother’s life were cursed by steroids. In 1997 she had a medical episode that led to a diagnosis of temporal arteritis, something we never really understood and never really observed any symptoms from, though apparently it carries risks of blindness and other ailments. Mum was immediately placed on steroids to counter these risks, and she was never again able to escape from them, whether due to a form addiction or simple bodily requirement. Whenever (under family pressure) a doctor tried to reduce her dose, it led to sickness and behaviour change and within a week she was back at her regular level of prescription.

 

No doubt the steroids helped her to stay alive for as long as she did and to avoid the worst of her core illness, but the side effects were very serious. Her face and body swelled up like a grotesque red doll. Her bones became very brittle and her recovery from any incident became very slow. Her legs were constantly a deep purple colour from bruises that refused to heal. I don’t know, but the steroids may also have led to incontinence and other medical issues.

 

What we failed to understand at the time but is now starkly revealed is how the steroids must have affected her behaviour. Once dependent on them, her sleep pattern was never healthy, and she hated the curse of having to sit up for half the night with no chance of sleep. And in her later years her personality hardened and she found it hard to be trustful or generous in any relationships, which probably impacted how willing people were to be friends with her. It has taken my sister and I years to reconcile ourselves with our mum, and I believe a lot of that comes down to how tough she was to like during the steroid years. My concern is that during those twilight years this will have caused her much mental hardship and to struggle to love herself.

 

Now I am quickly observing precisely the same mental effects myself (thankfully not the physical ones, but they will no doubt come over time as well). It is extraordinary how just 3mg per day is having such a profound effect. The longest I can sleep at any stretch is three hours, and a typical night will have two bursts of deep sleep of two to three hours divided by an hour of reading. The 5am soccer world cup games have been a valuable distraction for me. By 6am I am wide awake and in full-blown production mode, but then I need two or even three deep naps during the day, before collapsing by 10pm and starting the cycle again.

 

More concerning are the personality impacts. My wife has spent ten years turning me into a more mellow and likeable person, teaching me the glorious benefits of service, kindness and generosity. My daughter visited from Dubai last week for a perfect trip, and she has observed my transformation as well. Together they were quick to spot the changes and motivated to alert the medical professionals to them.

 

I have reverted to my behaviour from a younger, more selfish and opinionated age. I have become needlessly quick to express an opinion or to offer feedback when silence would be a wiser course. The hyperactivity works against a peaceful household atmosphere. We are all obviously emotionally vulnerable just now, and this new me is far more likely to generate conflict among my most valuable relationships, the ones where we will have to rely on as this medical situation evolves. From the start of this ordeal, my greatest fear has been personality change threatening the legacy between me and my wife, and the warning signs are surely there now. Although we start the journey with a lot of love and goodwill to counter the threat, we need all the help we can get.

 

Urgently alerted by my wife and daughter at our first meeting with MSK last week, my quarterback gave full respect to their concerns. This is exactly the sort of area where we expect the well-resourced, patient-centric approach of MSK to pay dividends compared with the stressed individual clinicians of Long Island. My steroid dosage has already been halved and perhaps can be tapered further as we move into a new treatment phase.

 

We also must accept the benefits of the steroids. Their purpose is to reduce or prevent swelling of the tumour, and it is usually swelling that brings on the core symptoms and the risk of catastrophe. My core symptom remains as it was back in August, and perhaps that would not be the case without the steroids. We cannot afford to take unnecessary risks with the tumour. The quality time it is giving us every single day is worth accepting some trade-offs.

 

The hyper-activity is even a bonus in other ways. I am getting stuff done, including the unpleasant but necessary stuff like sorting out my complicated finances in Portugal. Even more fundamentally, feeling well must be the single most valuable contributing factor to staying well. If I start to feel sick, that can lead down a rapid slippery slope. Thanks to the steroids, that risk feels low just now.

 

While welcoming the benefits, I am thrilled that my wonderful family team was so quick to highlight the risks, and that my new medical team will take them seriously and perhaps find an appropriate middle path. I wonder how the last years of my mother’s life might have been different if she had enjoyed those opportunities. I wonder how many other people around the world are thrust into this cure that can so easily become a curse.

 

I wrote this blog in one sitting in forty minutes. That is my early-morning superman routine in action. It is how I am just now, for better or for worse, but the difference is certainly extreme. It is no wonder that sports stars and others are lured into the trap of taking steroids, for I can bear witness to the performance enhancing potential every single day. Heck, even my voice is much improved, with a strong core tome and breath control, a more flexible high register and greater awareness of the sound around me and how I can contribute to group intonation. I'll certainly happily take that.  

But while I can admire the new me and even make valuable use of it, I fear for its effect on my core relationships, and nothing at all is more valuable than those. There are aspects of the new me that I struggle to like, and that is sad after all the years of learning to be lovable. Still, we are still in the early phases and opportunities to find the right responses, and I can feel thankful to my family, on this Thanksgiving day in the USA, for being truly on my team when I really need it.

Symptom Bingo and other unhelpful models and analogies

 We are still stuck in the same loop waiting for a diagnosis that the oncologists trust enough to recommend treatment. This week we met at Memorial Sloane Kettering and we will probably rely on them from now on, and they have all the available material at this point so will pontificate once their pathologists have done their stuff. Meanwhile I still feel fine – actually eerily better than fine thanks to a steroid medication that is hyping me up – and somehow the longer we manage to go without any new symptoms or catastrophe, the quieter the ticking clock sounds in the back of my head and the easier it becomes to remain patient. It has been a blessing to have my daughter with us for the last week too.

 

Ever the strategist, I can’t resist finding models and analogies for the various aspects of the situation we face. The most morbid one concerned the brain biopsies; my mental model for those was Russian Roulette. No matter how the neurosurgeon tried to reassure us, those two procedures felt like taking mortal risks, and preparing for the first one was undoubtedly the toughest part of the ordeal so far. But, having survived one pull of the trigger, being asked to repeat the exercise was not easy either and I really hope that there won’t be a request for a third.

 

Now I seem to have been inserted into an episode of House. There have been many best guesses of a diagnosis shared with us over the last month, all containing various words that do not auger well, but the second biopsy led the experts to retreat a bit and to doubt some earlier assumptions. There is some unusual material in the sample and that has piqued their interest. Unfortunately follow up tests (including a gender-supporting mammogram this week) have not provided a breakthrough so far, so we now have rival teams of Hugh Laurie’s searching for answers. Like in all the best House episodes, I, the patient, am perfectly lucid and free, with my family, to contribute unhelpfully to the process. So far I have not provided the drama of an episode every time the show needed a commercial break. But there is the House background of the ticking clock for added tension.

 

The next analogy that came to mind concerned our transfer for leading our care to Memorial Sloane Kettering in Manhattan. The Long Island University Hospital is full of talented people doing their veruy best for their patients, but it was clear that their resources were stretched to the limit in many fields, and the result for the patients could be witnessed in compromised bedding solutions and in hurried communications. MSK is obviously abundantly resourced, and thrrefore hs the luxury of being able to supply a top quality patient-centred experience. On our first visit, the senior neuro-oncologist leading the team for my case described himself as my quarterback, and that was exactly what I wanted to hear.

 

The analogy that came to mind was an experience in a crowded airport departure lounge awaiting boarding for a packed long-distance flight, but being approached by an airline staff member and offered an upgrade to club class. On the rare occasions this has happened to me, I can recall a glorious sense of warmth flooding my body. The introduction to MSK felt very similar to that. Of course I have to remember that the passengers in club class are travelling in the same rickety plane with the same flawed pilot to the same destination the same distance away. But the cosmetics certainly matter.

 

My final image is the most common one, and that is of symptom bingo. I know the rules of this game very well, having undergone perhaps a hundred tests of my optics, motion skills and cognitive awareness over the last month. Many practitioners have used very similar tests to check me out. Most of them have read in advance that I have a peripheral vision issue so they start there and often seem bewildered that I can see anything at all, let alone get their questions right much more often than not. A few resort to making it more difficult by hiding their hands almost behind their backs so that only a four-eyed monster could ever tell them how many fingers they had raised.

 

Because the tests all focus on the same areas I have a sort of agenda for my own future. I suppose this is reassuring in a way, despite any clues about timelines or severity of handicap. What it does offer is a template for self-assessment. I play this bingo game with myself all the time.

 

The problem is that it is a hard game to play accurately. Worst of all are the phantom symptoms, brought about by fear and anxiety. As soon as I start to think about the numbers on my bingo card, I imagine I feel them. One of my clues towards self-awareness is when this starts to happen less; it signifies that I am closer to being at peace with myself. It is no surprise: in the end is these symptoms that will drive the agenda and the rate of my decline. It would be strange to imagine nothing in this situation.

 

The next problem are true symptoms from external and short-term causes. Last Saturday I noticed a rather strong burning sensation in both my hands focused at the lower end of all my fingers. I was immediately worried because that symptom is most definitely on my bingo card. Worse, unlike the optical issue, it was something I could easily imagine getting worse quickly and leading to a lot of pain and incapacity.

 

What I failed to note amidst my mounting panic was that on Saturday I had a PET scan. A heavily radio-active chemical was injected into my body, and then I was asked to lie still for an extended period. Surely that is quite likely to lead to the bingo symptom? Sure enough, by Monday the symptom had almost vanished again, though actively noting the absence of something can also be something I forget to do.

 

Then there is the challenge of judging how the true symptoms are developing over time. I try to monitor my peripheral vision issue each day. Some days it seems much worse and other days it seems a little better. But then I realise that on the days when it seems worse there is usually an external cause such as a very dull day or a heavy glare or trying to read something with small print in bad light. My conclusion so far is that the symptom has neither become better nor worse for a full three-month period. That is rather reassuring.

 

This week my quarterback reminded me of an extra bingo rule that I often forget about. Because the tumour is on the right side, I should expect most symptoms to arise more strongly on the left side of my body, as indeed has been the case with my peripheral vision. So far all the burning and other symptoms have seemed equally prevalent on both sides, and that is comforting evidence that they really are phantoms of unrelated to the core illness. If you play a bingo game or any other game, it is smart to remember all the rules.

Not even MSK can afford to give me an MRI every week so my own bingo card monitoring is surely an important indicator of my health and of the behaviour of the tumour, and it is something I have to carry on with as rigorously as I can and report honestly to my doctors. But it is not easy to do that. The many external tests give me an agenda but the quality of their execution I often lacking. I know I cannot trust many of my own assessments, due to the phantom symptoms from anxiety and then the true but temporary symptoms caused by external factors. I have to move past this towards a bingo card that I can trust and report. I guess it is something to pass the time, and certainly more fun than Russian Roulette.     

Succession and Legacy

 This blog may take on a new character from now on, because I am entering a new phase in my life. I may not follow the same discipline about frequency or length of post, but the purpose otherwise remains the same.

 

The new phase started last Friday when my health journey led to a clear diagnosis of a high grade malignant brain tumour, something that can be held at bay for an uncertain time but not cured.

 

The two night stay in hospital for the repeat biopsy was not comfortable. This time I did not make it to a ward at all owing to a shortage of available beds. Before my procedure, I was parked in various parts of the emergency area, in a crowded service corridor followed by a holding area where space, privacy and peace were minimal. I lucked out after the procedure though, because they left me in post-op overnight, and I discovered that this is the only part of the hospital that does not come alive at 5am, because their patients only start to arrive after 9am. Instead, once others had been cleared away, I had two nurses more or less to myself and would have been able to sleep had I not been pumped up on steroids. My book was a saviour that night.

 

Then it was no surprise that they packed me off home with indecent haste; we were pleased to exit before 10am, just 16 hours after waking from general anaesthetic and three hours after the devasting news was delivered, thankfully professionally and with due empathy. But it was maybe inevitable that later in the afternoon, with anaesthetic wearing off, medication not fully effective and the stress of many phone calls to close family, I suffered a crisis of phantom symptoms that made me think I would soon be back in ER. Luckily it passed, and now I am fully recovered once again.

 

Crisis can create miracles, and I am astonished at how much emotional progress my wife and I have been able to make over these recent days. It may have been the saddest week of my life, but in other ways it has been one of the most joyous. We are truly surrounded by love. Facebook has its uses, even if my Meta shares are rapidly becoming worthless (at this point, who the hexck cares?), and I have derived joy from renewed contact from many old friends, all showing great kindness. Strangely, the ones that are driving me to tears tend to be former work colleagues. A bi-product is a torrent of compliments that cannot be good for my inflated ego (once again, who cares?).

 

I now find many of my thoughts and intentions to revolve around legacy and succession, and I have a series of projects in these areas I find a weird drive to complete. Fortunately, these will play to my strengths.

 

I love the TV series Succession. The patriarch is so broken and unconfident that he survives only through sadism, usually exercised against his own children, who he breaks in turn while bequeathing all of his worst qualities. The show is somehow funny while also being as dark as could be imagined, and there not the slightest hint of a Hollywood redemption ending. Excellent.

 

Somehow I seem to have been able to find a diametrically opposite path in many areas of my life. Parenthood is all about giving our children the tools to fly solo and then getting out of the way, and the rewards are the greatest pleasures I know. At work, at one point I managed a team and stumbled into a model by which the primary purpose became to ignite talented careers. Somehow I got away with this for years, and we became very good at it and the reputation ballooned as we went. Many of the team have gone onto truly great things, and the pleasure I can derive from that is almost as great as that of a parent.

 

If I could offer one piece of advice to most bosses, it would be to get out of the way. Let subordinates develop relationships with your own boss, and let your team manage its own affairs. Set goals but give freedom of method, without constant reporting back to you. It works. And your own life becomes simpler too. But unless you are confident and competent it is hard to find the courage to work this way.

 

Now I have a series of projects to execute, ranging from some valedictory thoughts to simplifying finances and, most important, trying to help my wife to make good decisions to shape the altered life that she must face. In a way, the timing is lucky, because we were already in a process of planning our transition from the USA back to Europe. Last week I handed over my president responsibilities for our local community choir. It is a relief to have achieved that and to see the choir in such a strong position to thrive. Getting out of the way yields rewards.

 

These projects share a unique feature, their variable timeline. I have no idea how long I have, so everything is urgent. Every project must reach an optimal closure point every day, recognising that circumstances may necessitate immediate closure at any time. If that point comes quickly, a shaping study and Myers Briggs readout and a check in process are not much use, but the disciplines behind these tools can still help. It is a strange contradiction.

 

I have been thinking about any parallels from my experience, and the nearest I can come up with is as the last CEO of Norske Fina, after Shell had bought the business and before its final integration into the mother ship. My goal (succession again), was to get out the way as soon as possible, and external actors had incentives to accelerate that timeline to a faster pace than I was comfortable with, so I had to be ready for closure all the time. But we also had useful projects to execute and a business to run. I remember clearly our first Monday morning operations meeting after the merger, trying to refocus a dispirited and distracted management team onto day to day matters like pricing and signing customer deals and bad debts. It was interesting and fun and we made something of a success of it – I had always wanted to be a proper CEO and wasn’t going to waste my fleeting chance.

 

It is quite  good discipline to have the attitude of a best possible closure every single day. This does not mean skipping important steps – a poorly framed project will always fail. Critical items that take time cannot be shirked, even if the consequence may be a small chance that the project does not close at all. So there have to be clear priorities, with focus on those projects where that incomplete outcome would have the most negative consequences.

 

Most useful, the mindset of daily closure works against procrastination. By forcing a strong daily closure, and then iterating to a better closure on each subsequent day, there is a useful bias towards action and decision, with the comforting backstop that in an iterative world every decision can be changed the next day. A good example of a procrastination tendency is where there is need to resolve something with a life partner. It is wrong to rush in without thought, but almost as bad to put the discussion off until a perfect moment which never arrives. A mindset of best available daily closure is very helpful here, as I can testify based on the things that my wife and I have managed to resolve over the last few days, yet another source of joy.

 

I cannot really recall how this priority of getting out of the way first came to me, but I am grateful that it did and to anybody who helped me along that path. Facing the ultimate task of getting out of the way, I cannot imagine a more valuable life skill at this point. But the TV show would be much less fun than Succession.   

The Emotional Journey

 Ever since I noticed a small change in my peripheral vision back in August, I have been emotionally vulnerable. Straight away, I wondered if the underlying problem lay in the brain, and there is something about the brain that makes us all anxious. Moving through the slow process of referrals, ruling out other causes, and final confirmation that the brain is indeed the culprit, my wife and I have been on an emotional rollercoaster.

 

One signal that I am in a stronger emotional state now is that the phantom symptoms have stopped. Anxiety is so unhelpful, and so hard to avoid. Every day I check myself to test whether my vision has deteriorated further or whether I have new problems with motion or memory. Every day my first conclusion is that these problems are all manifest, and I then spend some time convincing myself that it is not really the case. Add issues such as chest pains and shortness of breath, all caused by the same anxiety, and it becomes to retain a balanced perspective.

 

While in hospital, I must have been subjected to over a hundred tests or interviews about these possible symptoms. Of course, as soon as somebody asked me if my fingers were tingling, they immediately started to tingle. Despite the waiting game we are now forced to endure, I am lucky enough to be at home and to be able to find some peace, for the first time in months. All the phantom symptoms have disappeared.

 

This peace must be impossible to find for those people who are in physical distress. I felt myself a bit of a fraud while in hospital on a cancer ward, surrounded by people who were really struggling physically while feeling perfectly fine myself (apart from the small matter of being an emotional wreck). In that situation, the phantom symptoms must become overwhelming, and, perhaps to an extent, even develop into true symptoms.

 

One feeling that many must suffer is the thought of being on a slippery slope towards a doomed ending. At that point despair will set in and recovery becomes very tough indeed. I was lucky enough to avoid this, but the feeling was perhaps closer than I realised. One night in hospital, a doctor gave me an inadvertent piece of false information, telling me that a long-standing health indicator had taken a marked turn for the worse. On top of all the terrible news of that particular day, I could not help the feeling arising that, even should I somehow come through the current crisis in a decent shape, I would surely face another tough course of treatment very soon thereafter. Therein lies the slippery slope. The sense of relief when the same doctor pointed out his own error was very powerful.

 

During the long days in hospital, our emotions moved through some well-defined phases. Luckily, we were able to quickly discard the harmful emotions of anger and regret and bitterness. I made a resolution right at the start not to be angry. It is a bit of an American disease to become hospital and treatment shoppers, to throw doubt on experts, and to adopt a posture that might need to lawsuits. Of course that approach may become financially necessary, but I cannot imagine it helping with healing. In the same vein, we also have some confidence in our health insurance. It can only make people more sick if they have to deal with the anxiety of potential bankruptcy or conscious choices not to accept treatments owing to financial risks. It cannot be a healthy system that leads people in that direction.

 

Unhampered by the negative stuff, we were able to progress to sadness. The possibility of losing many years of healthy life expectancy is certainly something to mourn. True to form, a model for understanding this presented itself to my mind.

 

In simple terms, we can experience joy in three time horizons. We can look back towards the joy of reminiscence. We can take joy from our present circumstance. And we can glory in the joy of an anticipated future.

 

The strangest of these three is the anticipated future. Before this health event, we happened to be a phase of a life with a very well-defined future, one that appeared full of joy. It has not vanished, but of course it suddenly feels very fragile. How I reconcile this to myself is the blunt realisation that if I am dead, I haven’t really lost anything. I do have to come to terms with the prospect of less utopian dreams, but such things are not the most significant things in life, and, in any case, realising such dreams was never a certainty. I don’t think this sacrifice will be too tough to face up to, once we manage to rebalance our perspective. It also helps to realise that an anticipatory thought does not have duration. We can derive as much instant joy from the prospect of a walk ort a good meal as we can from nebulous dreams far into the future.

 

The other time horizons are only helpful. Joyful reminiscence, laced with thankfulness, becomes ever stronger in my conscience. There is also no shortage of joy available from focusing on the present, either. We have been surrounded by love. Physically able, I can continue to live a purposeful life, at least for now. The sense of joy is only strengthened in this situation.

 

However, one challenge for me is to apply the same model of joy to my wife and family. I am potentially subjecting them to an extended period of caring, which of course can bring its own joy but can also be tough to endure. And, should I die, my loved ones must somehow find joy in a new future, including a whole new set of anticipatory dreams. Currently, I am finding it harder to face up to the challenges of loved ones than my own challenges. I have no current solution for this.

 

The next powerful emotion is fear. The physical pain, such as it is in my case, and all the phantom symptoms tend to drive fear. In this area the hospital did not really do a good job. Hospital life is a series of visits, and most visitors I only met once. Most announced themselves, but few explained their purpose from my point of view. To be fair, they all remembered to ask if I had questions. But the devastating news comes from many sources in many forms and at all times of the day and the night. My first and strongest reaction to all this was usually fear; fear for future pain, fear for crushing disability, fear of leaving loved ones unprepared. The time of senior medical professionals in precious, but I can’t help but conclude that some of their bedside manners do not serve the healing needs of their patients.

 

One thing that surprised me a little in hospital was the absence of any professional emotional support. Most of my visitors were empathetic, but none tried to help me with emotional needs, restricting themselves to general expressions of sympathy. A priest or chaplain came once, but could not get out of the room quickly enough. The hospital pays for a multitude of specialist clinical teams. I would have appreciated just one visitor with a psychological background who might have just let me talk and help me process my emotions. 

 

The next emotion is a general sense of being overwhelmed. That emotion came to me a few times in hospital and led to bursts of tearfulness. Most often, the tearful periods came early in the morning after a reasonable night of sleep, when perhaps my head was able to take a holistic view of what was happening. On balance, I think these tearful episodes were beneficial. In any case, I can’t claim to have had any control of them.

 

The final and most powerful emotion of all was thankfulness. In or out of anguish, there is nothing more powerful than love and human kindness, whether from close family or complete strangers. Everybody has expressed this love in their own way, but the cumulative effect has been powerful indeed. It is love that will get us through this ordeal, and I can only admire the strangers that find ways to offer love to ailing people who otherwise do not have it. For there to be healing, there must be love.

 

Now we have what may still be a long wait for biopsy findings and recommended next steps. I do wonder if my surgeon might have been able to give more of an idea of how long that wait may be, or even to promise an interim phone call at a defined time, whether or not he had something new to say. During the wait, sadness and fear still come along periodically, and, while we try to convince ourselves that we are ready for the news, in practice we probably are not. In the meantime, there is always love. And love always leads to thankfulness.  

Six Nights in Hospital

 The health issue I referred to in my previous blog eventually led me top the right specialist. He spotted possible root causes of concern and referred me to the emergency room as the quickest place to get necessary scans. So last Thursday morning I got up and drove to our local high quality teaching hospital. I emerged only seven days later, having been sent for four CT scans, an MRI and a surgical biopsy. Now I have to be patient while awaiting the biopsy findings – the range is a large one.

 

I suppose we should all be prepared for the sort of life changing shock that my wife and I have just endured together. After all, it can happen to any opf us at any time. There are many outcomes which can be more positive, but I suppose that last week my healthy life expectancy went down by quite a few years. Ideally I would have had prior discussions with my wife about morbid items like living wills and mundane matters like where to find the everyday financial papers needed to operate and what my computer passwords are. Heck, I never bothered completing an organ donor form, and I suppose it was hardly helpful to ask for one during pre-surgery preparation (they could not get it done).

 

We should do all this, but is it a very human thing to do? Before we were married, I raised the option of a pre-nup agreement, and my wife hit the ceiling. I was trying to help her to be well covered in case of a contingency, but of course it was interpreted as a lack of commitment. We all find such things difficult, and many of us can become suspicious and even superstitious. I don’t really blme myself for being unprepared, but it would have saved me some serious unpleasantness in the days before the surgery when I tried to play catch up at a time of extreme emotional vulnerability. I suppose there are some useful tips online, but how many of us really want to go there?

 

The hospital experience was intense and revealing. We all know that the US healthcare system has clinical strengths but is woefully wasteful. In this emergency environment I saw the strengths, and plenty of human competence and empathy, and I did not witness too much waste either, although I could certainly see the benefits of being a medical device manufacturer servicing the US.

 

I had eight different rooms during my stay. Mercifully each of them had a bed, but some had little more than that. I started in a post-triage room in emergency, with two of us cramped into too small a space. My buddy had his wife with him, and they were not acting well as a team under pressure. After a few hours they found me a solo cubicle in emergency, still loud and chaotic but at least spacious enough to receive a litany of scary news and suffer tearful incidents with some degree of privacy. They soon admitted me to the main hospital, but I was told I had to wait for an available bed.

 

I had the MRI during the night and was returned to my cubicle, but no doubt they faced pressure from more urgent cases so at 5AM they moved me to another section of the emergency room, a sort of waiting area for hospital admission. This one was shared and even more crowded. Every time my buddy or I needed some treatment or test, the poor nurses had to move one bed right into the corner of the space so they could do what they needed to do.

 

Mid morning, I expect the next stage involved frantic negotiation between overcrowded emergency and the main hospital trying to stick to its policies. The hospital relented, and I ended up spending several hours in an alcove on their ward before finally getting a shared room that evening. The next evening, pointing out that my bed was defective earned me the reward of a private room, which actually proved serendipitous for the hospital staff too, for my buddy in the shared room tested covid positive and all sorts of isolation protocols kicked in. A day later, no doubt it was these that led them to move me to yet another shared room, where I stayed until discharge, though much of the intervening time was spent in the peace of the surgical recovery ward.

 

Sadly the same impermanence extends to the staffing. I must have met over 200 staff members while in hospital. Most of them I met only once. Most of the rest I only met during a single shift. Only a handful really got to know me at all., and I must have explained the same story at least fifty times. This cannot be good for patients and must also work against job satisfaction for the staff.

 

Perhaps there is no good alternative. They seem to operate with a matrix structure. A few leaders are responsible for a ward. A single resident doctor has a holistic role for a patient, and, within each shift, the same applies to a nurse. But most people are functional specialists, turning up to do their thing and then disappearing. The junior ones pay respect to the ward and patient leaders, but the senior ones seem to just do as they wish, no doubt valuing their own time as the most precious commodity. Hence, the resident doctor is somewhat constrained from doing the job well: they are often chasing information, and reduced to offering platitudes to the patient. Like many matrix systems, it probably looked great to those who designed it, but it struggles when confronted with reality.

 

Each of the areas where I spent time had their own cultures, no doubt heavily influenced by their leadership. In the emergency area, pace and adaptability were key, getting things done the mantra, neatness, some protocols and even courtesy sometimes sacrificed. Patients and (it seemed, especially) their relatives, are desperate and often thoughtless towards staff, and staff have to be thick-skinned to cope under such stress. Fair play to them.

 

The post-operation setting was completely different. Hear precision and consistency are key. They have the space, time, equipment and staff to do as they need, and they jealously guard them all. In this environment the smallest mistake can have major consequences, so they make sure they don’t make such mistakes. Again, fair play to them.

 

The ward lies in between these extremes. They aim for the peace and precision of post-op, but my ward at least felt closer to the emergency atmosphere, such was the pace of activity, the lack of space and staff, and the sheer number of people passing through. The losers are the staff and the patients.

 

One example is the routine at the start of the day. The day shift comes on at 7am and is immediately drowned in familiarisation, an introduction round, crises, paperwork, discharging, preparing procedures, and even breakfast trays. As a consequence, the night shift are asked to complete a full round before leaving, dealing with blood work, vital signs, medications and anything else that is routine. How do they achieve this? By starting at 5am! The night is short for the patients, despite sleep being so important. I noticed that most of my emotional progress came when emerging from a decent spell of sleep, but these were rare. Add in the inevitable visits during the night for me and my roomy and the constant background noise of medical devices, and it is no wonder that sleeping is tough.

 

Patients have a neat remote control unit with a single button to call for assistance. The problem is that all the staff are always busy and they have to judge the seriousness of the calls, which of course can range from a request to find a channel on the TV to an urgent medical crisis. I tried to minimise my calls, but when I needed a pee somebody did have to unhook my medical devices. Sometimes it took fifteen minutes for someone to arrive, which is surely dangerous in some situations.

 

Even so, most ward staff were wonderful, so fair play to them too. I felt that the most serious flaws come in the area of patient communication, which was haphazard and sometimes rather thoughtless, especially from the senior visitors. I felt that one junior neurosurgeon in particular could hardly wait to operate on me!

 

The hospital no doubt produces feelgood marketing material showcasing their diverse staff, and indeed the staff is highly diverse, but unfortunately also highly stratified by hierarchy. I saw nobody except African-Americans fulfilling roles such as emptying bins or cleaning rooms, and few African Americans doing anything else beyond a few on graveyard nursing shifts. I noticed a particular cadre, mainly mature white long-islanders, who seemed to have relative sinecures, perhaps MRI operators being an example. And the senior medical teams are very homogenous and rather masculine, though some Asians are starting to be included. I have no evidence that any of this is a result of prejudice, but I find it a sad reflection of the society we live in.

 

I did not realise this was going to be such a long blog, and I did not even start to cover the emotional aspect. So that is good material for next week.   

Health and Happiness

 I have blessed with a generally healthy life so far. I have always slept very easily and very well, have rarely suffered from unwelcome stress and until recently have enjoyed enviable blood pressure. Just now I have some health worries, and this period is reminding me of some valuable lessons.

 

Firstly, good health and ill health both tend to be self-reinforcing. It is hard to break out of a cycle of health concern, but when in especially good health we can seem almost to have superpowers. When I played golf as a teenager, I recall occasional periods when I could stride up to the ball, lazily ignore most of my pre-shot routine, and still be almost sure that the result would be really good. There were far more times when the opposite situation pertained: despite taking great care and utilising all the tips and tricks, I could still expect the ball to dribble along the ground or veer off into the bushes.

 

We can see the same effect when watching professional sports, sometimes ascribed to confidence or to momentum. Whatever the cause, good and bad outcomes tend to reinforce each other. It is the same with general health. I remember a few summers ago catching my leg while trying to run through a puddle, and how this innocuous injury seemed to set off a cycle of other problems that lasted for months. It stopped eventually, and I wonder if I am currently in a similar phase again. Part of the cure seems to be to slow everything down to avoid risks, but I can’t claim that to be any fun, nor even sure to work.

 

Next, a big part of ill health is usually linked to fear, which only emphasises how health is a whole body and mind phenomenon. My current symptoms are not more than inconvenient, but they have set off a cycle of fear because they may portend something worse. As with most medical situations, I expect a long process of medical visits and tests that may rule some things out but are more often inconclusive, which does little to reduce this fear.

 

This fear manifested itself during the pandemic. Some people became sick, others cared for people who were sick, but most of us simply became fearful of falling sick. As the information remained sparse and the rumours took hold, this fear would not go away, and it led us to become sick, in the head, even when not infected with Covid. Even that sickness persisted and self-reinforced, and in many cases lingers even now.

 

I believe this fear also helps to understand older people whose lives become consumed by medical worries. We all know of elderly friends or relatives whose entire conversation turns into a medical litany. I had previously put this down merely to an absence of much else happening in their lives, but now I believe the fear factor has something to do with it too. Much of life becomes a series of long chapters, many of them agonisingly slow to reach any sort of conclusion, as a referral leads to a lack of diagnosis and then a further test, while symptoms do not vanish but are amplified by worry. We would do well to listen to these stories and to provide comfort where we can.

 

This leads me to my next lesson. Love and care and kindness matter. Last week I explained my predicament to somebody who I don’t know very well, and yesterday she surprised me by calling to ask how I was doing. That simple act of kindness made me feel so much better. I really struggled during the week when my wife had to travel overseas recently, and a simple hug has been worth so much since her return.

 

When we volunteer at the old people’s home, our practical value is rather limited, but I believe our emotional value to be quite high. Many of the residents have physical pain as well as fear, and somebody listening to them, or perhaps distracting them with a story or trying to cheer them up with optimism, is no doubt an important service. The nuns who run the home do an incredible job of gently comforting the residents. When we fall sick ourselves we come to realise that, even if we don’t believe in God at all, knowing somebody is praying for us can serve to make us feel much better. I also recall attending a twelve step programme when I was at my most emotionally vulnerable a dozen years ago, and how the simple kind companionship of others was the element which did me the most good.

 

We could do well to understand the power of this human care when we are healthy and don’t really need it. Being kind to others makes us feel better too. But for sure the day will come, perhaps sooner than we think, when we will really need human kindness. People who divorce or fall out with their kids or tend to cycle through relationships often have valid reasons, and would never advocate suffering within a relationship. But close companionship can be the most important component of a route back to health, so we should do what we can to treasure and protect the companionship available to us.

 

It is good to read how medical science is advancing so quickly, and also to observe that mental and emotional health is increasingly seen as an integral part of complete human health. It has always been hard to stay healthy, but ugly politics in much of the world and the pandemic have left legacies of angry or bitter people disdainful for their own health and that of fellow citizens. 

 

In New York, our leaders have identified this challenge, and that is the first step towards progress. But the road is long. De Blasio’s initiative undertaken with his wife was probably not given long enough to bear fruit. Eric Adams is right to point out the direct link to crime, and also the fact that societies have left a huge gap in mental health provision ever since we (thank goodness) closed down the asylums.

 

I believe my idea of payment for care, including within a family, would be a neat solution for much of this challenge, and it would give a necessary step up for gender equality, reducing ageism, and increasing respect for professional carers at the same time. Most of us would become kinder and more thoughtful, and that in itself would contribute to making us healthier.

 

Sadly, the political reality of the USA makes the chances of such a solution being implemented vanishingly small. In the UK, the new prime minister seems to have pinned her reputation to the mast of growth, via a model that seems discredited to me and to most commentators.

 

Payment for care would go a long way to restoring some healthy balance, but there are other dimensions to consider as well. Slowly, we should review how we all live. Solo urban apartment living makes sense for young people, but how can we design living spaces to create a sense of community for those that need it? A nuclear family works well for many, but perhaps alternatives would be better for some, especially as circumstances change. How can we design common spaces and mass transit to better cater for groups with different needs?

 

It surely does not help that virtually everything that is shouted at us via advertisement encourages us towards self-harm, whether through wasteful spending, unhealthy consumption, or relying on pills or supplements rather than more organic solutions to health.

 

Sometimes it takes an unpleasant jolt to alert us to ways we can improve, and I hope over time I can use this brush with fear of illness to good advantage. Of all the messages I can take so far, the value of strong relationships and of kindness stand out.     

Delusions about Democracy

 Democracy, like freedom, is a word which we in the west like to believe is generally synonymous with goodness, justice and success. Our leaders love to feed us this narrative since it tends to breed complacency and satisfaction and to stop us from thinking. Churchill’s quote about democracy being the worst system apart from all the others is often trotted out. Perhaps this is generally correct, but I find myself increasingly troubled but some nagging doubts. As ever, it probably depends on the context and on what exactly we mean by democracy.

 

This week I heard another great quote, this time one that was new to me. Mike Tomlin, venerable head coach of an NFL American Football team who are in the midst of a difficult transition, claimed that if he would start listening to the fans, then soon he could expect to be sitting among them. I like that concept and it feels true, though a coach who consistently makes decisions that fans dislike is also playing a very risky game. Based on the fan ideas I read online or hear during a game, following the fans would be a sure recipe for disaster. I will add journalists the list of groups whose ideas should be treated with a pinch of salt, despite it being their professional job to offer opinions to improve the performance of a team. In my experience these ideas are quickly proved wrong. A few years ago, a former player and respected pundit, Gary Neville, was given a coaching job, and he crashed and burned within weeks.  I believe that most of the journalists I read would be even less effective than him.

 

There are similar insights available in business. In this case investors and customers have immediate agency. But can you imagine a successful business where the employees, or any other stakeholder group, ran the day to day operation, or took frequent votes to determine direction? It is telling that business leaders, often some of the most vocal proponents of democracy, have the most dictatorial attitude within their own empires. In the business their call is for clarity of responsibility, and in most cases they argue for a single leader to be accountable for most decisions.

 

That is just as well. I have been involved in various employee engagement initiatives. They have their place, and can provide excellent feedback on matters such as culture, communication, motivation and respect. But don’t ask wide groups of employees to give decisive input on strategy or even for innovative ideas, unless you want to be disappointed and to fail.

 

Indeed, I believe that my primary business community, strategists, woefully undervalue themselves. Nobody denies that strategy matters; most would agree that it is a great a differentiator as exists in business. But most big businesses do not cultivate a career specialism in strategy. The academic literature is sparse to the point of embarrassment. Senior leadership teams seem to think they can do strategy as well as anybody else, despite usually having few relevant skills. When they need help they quickly call for outside consultants, who charge a fortune yet rarely stay long enough to make a difference and have very different incentives to the leaders they are advising. Can you imagine a leadership team trying their own hand at engineering, or outsourcing the activity to a consultant?

 

Most organisations demand an organisation chart that offers clarity of role and huge decision-making power to leaders. Churches do not meaningfully consult their congregations about doctrine or practice, and indeed the largest church has a singular leader deemed to be both infallible and chosen by God. Britain has spent the last two weeks mourning somebody with theoretically absolute authority. A military unit is defined first and foremost by a hierarchy of leadership, with subservience and obedience considered key attributes. Even in an artistic pursuit such as a choir or an orchestra, there is little room for dissent: one of my favourite conductors frequently states that choirs should not be democracies.

 

So there is almost no aspect of life where democracy is considered a smart mode of operation, and for good reason, yet we are supposed to believe that this is the best way to run a country. Every few years the management of the most influential parts of the enterprise is subject to a poll. The entire direction and strategy is subject to very frequent change. Furthermore, in many democracies there are parallel leadership teams, each with limited authority, required to reach agreement among each other for most important decisions.

 

This method of allocating power is surely superior to a monarchy or a system lacking any accountability, but it has very obvious flaws, ones which would doom any business in a competitive market.

 

To succeed, an enterprise in any field needs a few tenets in place. These include an agreed purpose, sets of goals covering multiple time horizons, and some priorities. The enterprise also requires talent to be available and effectively deployed, especially in leadership positions, and a sound governance structure for its operation.

 

How likely is it that a democracy can produce an operation that satisfies these requirements? In many cases, it feels very unlikely. To have a better chance would need very strong institutions acting in parallel with the elected parts of government, guided by a mature and sufficiently independent civil service. The election process practice matters too, enabling high quality, unbiased information to be available to citizens.

 

These factors help to understand how some democracies can endure while others founder, and how volatile an immature democracy is likely to be. Rating these factors can also show how vulnerable a democracy is at any moment, what needs protecting, and which claims by protagonists should be most closely scrutinised. Where there is gerrymandering, where there are too few or too many parties, where money has an undue influence, and where information can be warped by interested parties, democracy is vulnerable.

 

The weakest aspect in most democratic platforms is purpose, goals, and priorities. In a well-run company, that is where the leadership team can make most difference. But a typical party platform in many democracies can be reduced to a set of platitudes. The best we can hope for is one or two reasonably well-articulated policies, which can give an indication of competence and values. Often we don’t even get that.

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Rather than blandly claiming that democracy is always good and other systems always bad, we can assess the other systems to the same analysis. Does the leadership have a defined purpose and multi-period goals that work for the best interest of the citizenry? Does it deploy the talent available to it, and is there some internal accountability? Do those making decisions have sufficient unbiased information?

 

China is far from perfect, as The Economist and other intelligent commentators are obsessed with pointing out. But, if you view the communist party as a sort of civil service or business organisation, it does not do too badly against my criteria. It can certainly argued that it is better placed to deal with the issues facing its citizenry than most mature democracies. The recent concentration of power is a concern, but over the last twenty years the leaders have certainly got most of the biggest calls right. I can articulate the purpose and the goals quite easily and can see how these can benefit (most of) the citizenry. These goals are reviewed appropriately and translate into decisive and sustained actions.

 

I cannot be as complimentary towards most autocrats. Sadly, I also struggle to be as positive about most mature democracies, at least those outside northern Europe. If I focus my comparison between China and the USA, I can understand how one has been doing better than the other, and I certainly know where to place my bets for success in the immediate future.