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.
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