Boredom, Loneliness, Rest and Peace

 Every so often somebody asks me if I’m ever bored. The context is usually my retirement at fifty, and the questioner may be contemplating their own retirement and be worried about how to fill their days. I have a few stock answers, all starting with the word no. Usually I expand on my feeling that there is always a wide choice of things to do, most of us can find some that work for us, and the removal of the need for remuneration actually opens up possibilities. Especially now, I am so happy with the decision I made to retire early.

 

But this weekend a strange thing happened. A good friend asked me the standard question, probably not for the first time, but perhaps indicating a change in his own mental state. I found myself pausing before answering. Because for the previous two weeks, since getting back to NYC from Europe, I had been bored as hell.

 

I spent a while pondering possible causes and found several. If I am strictly honest with myself, I have often been bored during the New York summer. The heat and humidity are horrible so being outside is not a good option and inside there is the constant battle with air conditioning machines, trading off feeling hot and being bothered by noise. Neither heat nor noise help with reading or watching TV, and this year the Mets are playing losing baseball to boot. There are few choir evenings, yet my wife still has to go to work. And July has only just started so there are many weeks of potential boredom ahead. I can swim, sharing the pool with. Thousand kids as usual in summer, but tennis feels too risky even on days that are free of humidity. I could not find a single Broadway show that interested me last Wednesday either. 

 

Then I found myself contrasting the inactivity of being back in New York with the delight of the previous weeks in Europe, with never a dull moment and much to celebrate. It did not help that last week was an oral chemotherapy week, and that often leads to nausea, loss of appetite and fatigue towards its end, certainly bearable but hardly a balm against boredom. Now I have the additional issue of occasional dizziness to cope with too. I am tired so lie in bed but that state can bring on the dizziness, so I get back up, and then what?

 

Then there is the weird paradox of my time horizon. If you think you only have six months to live, there is not much time to be bored. That may still be the case, but now we are also considering much longer survival scenarios. Should I start some new hobbies or projects? If I will be alive but diminished, will boredom become much more of a pervasive risk?

 

One great relief is that no loneliness has accompanied the boredom. In my experience, loneliness is the root cause of many unwelcome emotions. I am so lucky to have a loving life partner and supportive family and friends, who will help me through any tougher moments. In Europe I was rarely apart from my wife, while back here we have been forced to settle back to the regular routine of her office days, but that is truly no real hardship. Facing up to chronic sickness alone must be so much harder. It is no surprise that long-wed couples tend to die within a few months of each other.

 

Anyway, I am pleased to relate that my boredom has lifted for now, and not just because the humidity is taking a rest and the nausea from treatment week has gone too. My salvation was the weekend.

 

That started on Saturday, when we spent a delightful few hours chatting at the home of good friends (and I’ll forgive and even thank them for quizzing me about boredom). I had a nap in the afternoon before cantoring mass at our local church as usual. On Sunday we went to mass at the church where I usually sing and were delighted by the music and the atmosphere there. After a dim sum lunch and another nap, we went to help serve supper at the old folks’ home where we volunteer, our first visit in two months.

 

Having spent some time pondering where the negative feeling of boredom came from, I spent further time wondering how my spirits could be so lifted by a simple weekend. Part of the answer comes from the word we, in that all our weekend was spent together as a couple. I can expand that we to include the friends and communities we spent time with.

 

I had forgotten how important these simple routine weekends are to me, and how the liturgy often plays a beneficial role. I here the readings twice, listen to two contrasting homilies and participate in two sets of music choices, and often we even end up talking about the messages while at the home. For all the harm done by religion and religious leaders, there is much comfort to be drawn from these simple and wise messages.

 

The gospel this week was summarised within the offertory hymn I sung on Saturday evening. It had a feel more of a song than a hymn, with an octave leap in the second measure and beautiful legato lines. I enjoyed singing it very much.

Come to me, all who labour and are heavy burdened, and I will give you rest.

Take up your yoke and learn from me, for I am meek and humble of heart.

And you’ll find rest for your souls. Yes, my yoke is easy and my burden is light.

 

When we think of heavy burdened people, we naturally consider folk like miners or women carrying water on their heads in Africa. But burdens come in many forms, often without a physical component. Somebody caring for an aging parent is burdened, as may be somebody struggling with loneliness or disease or fear. As a goal to mitigate this, rest could refer to a long nap or a summer vacation, but more powerful is a soul at rest, a soul at peace. That soul is usually not lonely and rarely bored, and has probably helped itself through service to others. Considered this way, it is also easier to appreciate the power of prayer.

 

Early in my cancer experience, I tried to come up with a model to describe a progression of emotions. Reject anger and bitterness, embrace sadness and grief and fear, and utilise thankfulness to move towards acceptance and eventually peace. I have found the model extremely helpful, and the liturgy of this week seems to underscore it too, following my rough patch of last week.

 

How can loneliness, boredom and rest be incorporated into the model? I think I will twin companionship with thankfulness, and rest with peace. Companionship is the antidote to loneliness and boredom. Companionship can involve sacrifice and compromise, but its benefits can make all the difference. For some the companionship can be with divine concepts, but fellow humans are perhaps more readily to hand. Unlike thankfulness, you can’t simply create companionship in your mind; instead you have to work on it, and ideally not wait until a crisis strikes. We all have ample potential to offer companionship as a gift to others, and that gift is one that rebounds to our own benefit.

 

I am truly blessed to have plentiful companionship in my life, and that gives me confidence that any boredom will be limited to its usual seasonal moments.    

Coping Strategies

I realise now that I have nearly a year of experience of living with a health crisis. I have made many mistakes but also learned a few lessons. Perhaps some of these can be useful to others, even if every situation is different.

 

My first learning point is to choose your team and to set the crisis up as a sort of project. It is a strange project because it starts in an instant and has a variable end point. One of the tough tasks of the team is to constantly be working towards the best available closure for the project, given that closure can occur suddenly.

 

The team is much easier to form and much more likely to be helpful if it can be anchored by a loving life partner. Wow, that is a powerful thing to have in these circumstances. But I have to try to remember that my life partner has her own goals for this project, and indeed the project will close for her later than it will close for me. This is not all about me! Last month a friend quoted an interview with a retiring oncologist, whose top learning point was to note that he was treating the partner as well as the patient. Bravo: if only more medical professionals could have the maturity to see this.

 

I set up my core team in the frenzy of the early days, facing a biopsy procedure that I feared might be fatal. As with all project teams, there need to be goals, and clear roles which play to strengths of team members. The team process has evolved over time, but we have made each other stronger and more effective by working together. Having team members dial into my consultations has been especially helpful.

 

My next learning point is to try hard to manage incoming communication. Medical professionals are invariably impressive clinically, but the quality of their communication varies wildly. We have experienced some excellent communication, but also insensitivity, inappropriate messages and even mistakes. I have learned that if I simply let things happen I often end up confused and more upset than I need to be.

 

In the early stages there are surely many messengers, often under a lot of time pressure. One immediate trick is to use the team by having them dial in. But as the crisis develops, it is possible to build relationships with some of the experts and to help them craft their communications in ways that suit me. By now our lead oncologist knows what I want to hear and how, and what works for my wife. We have been lucky enough to reach the same level of trust with some others. As a general rule the experienced nurses are fantastic, the senior doctors are variable and the interns are frequently terrible communicators.

 

A third lesson I to put effort into understanding my medications. The treatments and scans are all a bit of a mystery to me and that suits me fine, but when it comes to meds I can make a difference. They all have their purpose, but many high side effects and those effects are different for each patient, so it is hard for the doctors and nurses to prescribe pills that work best for me.

 

In my case, this was most obvious with the steroids. I ended up taking various doses of steroids during October, November and December last year, and it took us a while to work out that they were the culprit when it came to personality side-effects. Steroids play an important role in treatment, reducing swelling and even preventing catastrophic setbacks, but in my case they also made me rather aggressive, over-active and judging. I was wide awake soon after 5am each morning and anxious to get on with many projects. I was grateful for the 5am kick-off games during the soccer world cup – they provided plenty of distraction and prevented me from doing even more dumb things while amped up.

 

Luckily I was able to build trustful relationships with specific nurses and doctors and we could start to talk through the trade-offs involved with medication choices. They support my general principal of minimising the medications I take, and are happy to work with me so that the overall effect is as positive as it can be. 

 

There is no escape from the main oral chemotherapy pill, since that is the one which can kill the cancer cells. Its job is to hang around my body as long as it can and to destroy anything it finds that it does not like. With all that poison in my body all the time, it is no wonder that the pill causes side-effects. It is great that over time I have been able to work with my doctors and nurses to keep these under control.

 

A related lesson is to work out myself how to minimise side-effects. This will surely be different for everyone, which means there are few general rules and it is not enough to rely on the medical professionals.

 

Nausea has been my main problem ever since I started on the radiotherapy and chemotherapy. I have anti-nausea pills up my sleeve, but I try not to rely on them, especially since they have their own side-effects. For me, the best solution for nausea is to eat. It is counter intuitive, because the nausea can kill my appetite and make some foods very unattractive to me, but I find that if I force myself to eat (as well as to stay hydrated), then it passes more quickly. Usually I find simple starchy foods do the trick, as well as some fruits, notably apples. I also find I am fatigued, but I tend to simply embrace that, sometimes taking three or four short naps in a day. I am lucky in that I seem to be able to sleep anywhere and at any time, yet I wake up before the nap destroys my ability to sleep overnight.

 

Now I have the dizziness as well, on and off, and that was very scary when it first emerged. It has not been a problem lately, and I already have a pill for the next time I have an issue, and I am optimistic that the physical therapist can do something for me after a consultation next week. I quickly found that a way to control the dizziness is to breathe deeply and actively.

 

Knowing my medications and developing my own coping strategies seems to help with the physical challenges, but the emotional ones are something else entirely. Having a strong team is even more critical when it comes to emotions. The best decision I made with my team was right at the beginning when we resolved not to be angry or bitter. We have been able to face the other stages of grief without having the anger boomerang attacking us.

 

We also resolved early on to avoid secrets and to communicate widely and openly. I think this has turned out to be a good idea too, though I recognise it is not for everyone. And for sure in the early days we were guilty of over sharing, another legacy of those cursed steroids.

 

Extensive and open communication has also yielded dividends for us within the team, and especially within the marriage. These emotions are hard enough to face as it is, so the more we can help each other from a strong base of understanding, the better we can manage. Our time horizon is still fluctuating wildly, but at least we can talk about that and its implications, and slowly navigate our way towards a direction that can help us both.

 

So that is many lessons, and no doubt there will be many more to come. And did I mention thankfulness? That is the magic medicine that makes everything better.