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.