We are essentially alone, in the sense that what goes on in our brains cannot be fully communicated to anyone else. Technology will probably advance one day to a point where every brain connection and every pulse down our synapses can be monitored but even if that network and the dynamics were reproducible we still wouldn’t be able to reproduce an individual’s experience because it would need to be mapped onto our own brain network and I suspect everybody’s brain is unique in how it is made up. We can already make generalisations about certain areas of the brain, and I am sure that process with be refined to greater precision over the years but given any particular experience we will never know what that completely feels (not sure if that is the right word) like for another.

I guess this process of refinement is a fairly standard human story. Somebody notices something unusual and sees that it might be useful. They work out how to reproduce the process, and test how effective it might be in the scenario they envisage. If it shows promise then the process is refined and more testing goes on, eventually leading to a product. At some point somebody also works out how and why the thing works, this can lead to further ideas and new developments. The discovery of penicillin seems to be down to Alexander Fleming noticing that a mould arrested the development of bacteria in a petri dish then isolating what that fungus was. The development of antibiotics continues to this day in the battle against invasive bacterial infections.

What has this to do with being alone? I was reminded recently of how difficult it is to be chronically ill, at least in the UK. I was playing some music with friends recently when one of them received a phone call that she was expecting. She had been asked by her consultant to sort out getting a preventative immunisation before she underwent some debilitating treatment that would impair her immune system. The mobile call was part of sorting this out. Perhaps I am feeling over protective of my friend but I thought this asking a lot of her. Until recently my friend was healthy and strong but suddenly she was thrown into the maelstrom of a life threatening disease which needs to be sorted out sooner rather than later. That’s a big change to get one’s head around, and it seemed to me to be unfair to ask her to also sort out some of the treatment. She’s a highly capable and emotionally intelligent person so she got on did what was asked; I wonder about the people who have less resilience.

As I walked home from my music making, I was musing on this issue when it occurred to me that a similar thing had happened the day before. I was with another friend attending her first appointment seeing a consultant in regard to some worrying test results. When discussing the next steps, the consultant said he wanted to see her again before a certain test was to be carried out, and he put a request for that test into the system so that my friend would receive an appointment in four to six weeks. After the consultation we went to the clinic reception to arrange the next consultant appointment and one was automatically assigned by the receptionist. It occurred to my friend that the date was well after the test procedure would be scheduled so she queried the receptionist about this. He had to talk to his supervisor. The issue was repeated and phone calls were made and eventually an appointment in the right time frame was found.

In both the above cases, my friends are dealing with chronic life threatening illnesses which have appeared out of nowhere. In both the above cases they have had to make a concerted effort to get the system to do what the consultants recommended. Now I guess I could have stepped in and tried to get the appointment my friend needed, but the reality is that I have no authority to do that. I am a supportive friend, not a relative and the only person to whom the system will listen to is my friend, there is not capable relative in the same country. I have long since recognised that the NHS is fantastic if you have an acute illness, they will move heaven and earth to treat you in the best way they can, but if you have a chronic illness then you will need self-motivation and confidence to get the treatment that is suggested, let alone deserve. This was my experience over the last twenty five years too. In the current crisis, I cannot see this changing anytime soon, if ever.

So much depends upon the medical team the patient ends up with. I think one thing that has changed greatly for the better is that consultants have much improved people skills nowadays. I was tremendously impressed with how my friend was treated during her first appointment. The consultant spent as much time as necessary listening, explaining, and discussing in order to reassure my friend, there was never a sense of being rushed or being patronised. I hope all the consultants she meets on her adventure are as accomplished in their people skills; there were times in my own treatment when I had to make the doctors stop and understand what I needed to know, and how I needed to be treated. It took a great effort on my part to do this as I don’t naturally make demands, it was very stressful too.

It looks like both my friends have excellent consultants and medical teams working with them, and they also have friends supporting them but at the root of this business they are alone in how they will experience their adventures. It can be no other way unfortunately. I hope though that my experience and insights would make that journey slightly less lonely that it might be.

 

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