I found out last week that an old friend of mine had had an sub-arachnoid haemorrhage. In layman’s terms this means a blood vessel bled into the cavity that contains his brain. To put it bluntly this can kill you, and in a significant 30-40% of cases it does, whether you are in hospital or not. Those that survive the initial onslaught are often left disabled (it is a type of stroke) and a significant risk of it happening again. My friend seems to be extremely lucky. It is a week later now and though weak he is able to move around a bit. No source of the bleed has been found as yet, but each day of no change means an increasing chance of survival and recovery. There seems to be minimal brain-damage.

When I found out about this, I was lying in bed, slowly waking to the day. I heard the news from my wife and filed it away. I’ve had haemorrhages myself so I know it is bad and I know that one in the brain can kill you, or could cause horrendous headaches and send you into a coma. I know these things but I have no emotional response at this stage. This seems curious but then again, there is nothing I can do at this stage. Later in the day, or possibly the next day, I am visiting a consultant in hospital ostensibly to have my 6 monthly liver MOT. At some point in the visit, I begin to think about my friend.

It was in this hospital that I had my last major haemorrhage that bumped me to the top of the transplant list. This hospital where I felt my life blood drain out of me, saw my own skin turn blue, and observe a nurse on each arm manually squeeze blood into me so that I would last long enough to get into theatre. I was lucky too. The bleed was stopped but the trauma of the experience remains. I wonder if my friend has had to have brain surgery, whether he is in a coma, or even if he is still alive. From feeling nothing, I am overwhelmed with tears and emotion. I am driving now and tell myself to stop letting my imagination get away from me. I manage to shutter the feeling down, but every so often, the emotions breach the barrier and the tears come. I keep rebuilding the wall until I am parked on my driveway but by then there isn’t much left in my emotional tank so few tears come.

I want to visit my friend but he has to be kept in a protective cordon to protect his blood pressure rom increasing and cause further bleeding. I want to reassure him it is okay to be scared and fear sleeping in case he doesn’t wake up. I want to acknowledge that he has changed sides and gained the wisdom that comes from knowing truly what it is to face death. The wisdom that puts life into context. He now not only knows that life is incredibly fragile, he truly understands what that means. It is a good thing to understand but which only comes from horrible experiences.

We humans love to categorise and understand things but somethings can only be fully appreciated when they are actually experienced by a person. Death is one of those things. Seeing someone die gives clues to the experience but facing it yourself only brings understanding. Other things come to mind too. A Caucasian will never truly understand what it means to be Black and live in America, I just can’t get my head around the everyday racism a black person faces that is built into American culture and history. It is hard for me to belief that being in a gay relationship was only decriminalised in my country in the year of my birth, and that one’s own personal sense of self can be still be vilified just because it is different from the majority.

What I do know is that I think differently from the majority, and my thought processes can lead me to behave in ways seen as awkward or just plain wrong. People have tried to bully me because I was quiet or because I was seen as too clever and to my shame I have tried to bully other outcasts in order to blend in with the majority. I have acted as part of the majority for multiple decades and it resulted in mental health problems. The pressure to fit in can still cause me health problems but now I am trying to mould my life to my needs and it is going to take time, and it is going to take understanding and acceptance because it won’t be what the majority of people think it should be.

I saw my support worker this week and she suggested I get a book by Rudy Simone called “22 Things a Woman Must Know (if she loves a man with Asperger’s syndrome)”. It isn’t a long book, each of the “things” covers only two or three pages but the list is telling. The twenty-two things describe a man difficult to live with and difficult to love, and that man is me. I wonder how many neuro-typical people have even heard of it, let alone read it. It is a shame that the book isn’t written in a sexuality free way though.

 

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