The journey to the lows and back – Part 2

To understand the journey you have to understand the punches that got me down in the first place.

1. I read an article about a man in his fifties with RP who had gone to bed one night with useful vision and had woken up the next morning without any useful vision. He had gone from tunnel vision to totally blind overnight. I think I was vaguely aware that this was technically a possibility but I had always assumed that I would lose it all more gradually. I had not prepared myself mentally, financially or practically for this outcome. But it was unlikely, wasn’t it?
2. Then I met a lady in her sixties who had RP. The exact same thing happened to her. She went to bed with some residual useful vision (still using a stick not a guide dog and reading with her eyes not braille or speech software) and woke up with basically nothing useful in the way of vision. She was inspiring in how little she had let it change her life but meeting her so quickly after reading about the same scenario with the man in his fifties did make me think. It made me think in a way I had not thought before;
3. Then my eyesight got considerably worse. Losing your sight because of RP is not a consistent process. There are periods of stability; periods of slow loss; and periods of rapid loss. For the last few years I have had periods of slow loss coupled with stable periods. I always knew that another period of rapid loss would come but that does not make it any easier when it does. Initially you notice it because you walk into walls or doors in your own home or office that you wouldn’t have before because you had a learnt a route but now that route doesn’t work anymore as you can’t see the markers you previously relied on. Then you realise that the extent of things you can see as a whole has got even smaller. An easy test I have always used with myself is my hand. If I spread my hand out on my desk in from of me and look down I can now choose to look at the top part of two fingers at a time. Or part of my thumb. I cannot look at part of a finger and my thumb at the same time. I used to be able to see the top part of three fingers at the same time;
4. Then I realised that I was not losing the vision in each eye at the same rate (another naïve assumption I had made). If I put my left hand on the side of my nose (palm flat with the side of my nose) I couldn’t see anything at all. Whereas if I did the same thing on my right eye I still had some vision down the side of my hand. The vison on my left side had reduced dramatically;
5. Finally I heard a very eminent and inspirational Paralympian with RP speak about his journey so far and found myself laughing with empathy and slight awe as he told his experiences only to have that moment when you realise that he is you. Not in the sense that I am a Paralympian athlete. Those that know me know that I would struggle to win a primary school sports day race let alone a Paralympian event. Nor do I mean that I could be the inspirational and “can do” man that he so clearly is in his life. I mean that this man in his early 60s standing up with his guide dog is going to be me.

Obviously I have always known that the Paralympian’s situation is where I am headed, in my 20s I was told by the doctors I would be there by the time I was 40 (I am now 42 so that was wrong), but because my mind was full of thoughts of losing my eyesight overnight, punches 1 and 2; and then a rapid period of sight loss, punches 3 and 4; punch 5 hit me in a way that it had never done before. It wasn’t the fact that I am already blind and going to be totally blind that caught me off guard. I know that. Okay it did wake me up to the fact that I was not preparing for the long term practicalities of the change as well as I probably could, but that was more of a “note to self” rather than a slippery slope to the low moment. No, it was the fact that the five punches together were the catalyst for me questioning myself that was the problem. My achievements. My goals. What did I want to achieve both before and after I lose all my sight? It made me question this in a far more fundamental and raw way than I had ever done before. A sort of bog standard mini midlife crisis but overlaid by the ticking clock of total blindness. It took me to a place of rather pathetic self-absorbed navel gazing.

As I write about it I can find myself disliking myself for being taken to that place. The sort of self-pitying woe that I have always found slightly contemptible. But that is the problem with the slippery slope. Once you are on it is hard to go anywhere but with it until you find the way back. Just saying pull yourself together and get on with it doesn’t always work. Well not for me. Not in this case. It sounds so ungrateful but I have to have a trigger that makes me realise again how lucky I am. I have always known how lucky I am but sometimes, however rational and direct you are with yourself, you momentarily lose the ability to believe that. It is not a nice mindset. It is the absolute epitome of selfishness and you have to hope you can turn it around again before life throws the next punch.

My trigger, this time, was attending my daughter’s parents evening at her secondary school. She had a slightly rocky start adjusting to the change of “big school” but that evening she was confident, quietly proud of her school, and at ease. It was a great feeling to see it, to see her resilience and achievements, and suddenly it was like a switch had been flipped in my head. I could see how unattractive and destructive the self-wallowing was again. I could start to climb back up that slope again. I could bounce back ready to set new goals and to take the punches again.