A Time of Reflection

Covid-19 and Anniversaries

This time of year is always one of reflection for me because it is so filled with anniversaries. Some happy, and some (shall we say less so). On Wednesday the 1st of July it will be a full six years since my first big seizure (one change is that I can now spell seizure, this is a joke by the way so you're allowed to laugh).

But mainly the changes have all been physical. I tire so very easily and indeed I need to have a sleep mid-afternoon almost everyday and if for some reason I have to skip a day then I'm going to be very adversely effected the following day to the point where I will be unable to do anything. 

My memory is still shot to pieces, which also makes functioning very difficult. I write everything down and I mean everything but even so getting by is hard. Remember to do all the little (and not so little things I need to do) and then remembering what I've done. Both in an administive sense but also an autobiographical one. Lot's of things go, maybe most things things aren't fully intact until 2010, which is now getting to be a very long time ago. 

But I have now accepted that I'm not going back to the Old-Adam, but I probably said that last year it's a slow process. 

But the new-(ish) problems arising from my Seizure and Epilepsy et al combined with my old problems because of Neurofibromatosis  do make me anxious for my future.  

On a more positive note Friday (the 3rd) is the 3rd anniversary of getting Olive and she has brought a lot of happiness to Emily, Renee and my lives. Even if she can be rather demanding at times. 

But I have my own cat now, Panda who is not without his own demands.  Indeed I had to stop typing this to go prevent him peeing on the floor. Cats! 

But he's a lovely chap. 

There are some other anniversaries as well. But the big one is on Sunday July 5th. 5 years since ordination and of course 10 since starting this whole journey and of meeting Emily. 

In the outside world. Covid-19 is still sweeping the world and the UK and I've been in basically total self-isolation, I see Emily and Renee but even there I'm careful not to make physical contact. 

Mum has also been isolating but I've been Zooming with her every day for a chat and to study the weekly Torah reading.  Then of course there is my weekly Talmud Study with Tina.  As her girls were home from school I got to 'meet' them, they're lovely and they got to meet Panda. They were very taken with him. 

So even during Lock-down I've been far from lonely. If anything I've been more sociable than normal. 

Well that's brought us up to date

A week of anniversiers

First of all an apology this post is comming from my IPad and as such the spelling might be even more idiosyncratic than normal, my laptop died and is currently in Stoke with Rebecca seeing if it can be repaired. But between my phone and this I am managing okay.

Again not much has changed since my last posting. I've completed the training at AgeUK and have started making home visits, which I am enjoying a great deal.  I'm still hanging out with Panda (altnuecat). And studying Talmud with Tina and Francesca.  Today marks 5 years since my first big seizure and now as always when a mile stone like this roles by the more I become aware that at the time, and indeed for ages there after I had not realised how utterly life changing it was going to be, and that I now a accept that I'm going to have to reassures and recalculate what I'll be able to do more or less on a permit ate bases. I can still basically manage one thing a day, yesterday I did a visit with the elderly gent I'm visiting though AgeUK it was a pretty long visit and I enjoyed it and I'm pretty sure that he did too but I was utterly wiped out by the time I got back indeed I only just made it back to the flat in time (the only reason I remember this is because of the detailed notes I made at the time).

Tomorrow is also an anniversary, an anniversary in that case of getting Olive. Unlike the above this is a very positive anniversary. She has made a big and positive impact on my life and I think on Emily's as well.

I have also been continuing with Daf Yomi which has been a mixed bag but over all very positive. Today's daf has been was practically interesting (Arachin 16).

And of course the big Anniversiry is on Friday. 4 years since ordination, which means it's nine years since going to Jerusalem and starting this whole journey (3312) days. Wow just
wow.

Not a lot of news

Not much has changed since my last post. I am still at home in Keele recovering after my second seizure and longish stay in stay in hospital. I am slowly, slowly getting back on my feet, but it really is going to take some time. I have caught up with Daf Yomi and I have started Skyping into some of Emily and my 5th classes so this is progress.  I also have another hospital appointment and scan coming up on the 9th of November so hopefully I will have a much better idea of what is happening/what has happened after that.
My short term memory is still a bit patchy, although nothing like as bad as it was. And in fact this might be a side effect of some of my other medication.
I am still resting, and digesting what has happened and I am also still feeling really deeply touch by all the love, care and support I have received from so many many people.  I am learning and in some cases re-learning copying mechanism for my memory, short attention span (I was very very easily distracted as a child in school). So all in all not too much has changed since my last post but what changes there have been have been in right direction, which is a good thing. I am still a bit down but I am hopeful that this also is starting lift.  

A second and much more serious seizure

So times have been a little tough, but for better and or worse I don't actually remember to much about what actually happened. Although I have been able to 'reconstruct' what happened from Facebook, and notes I kept at the time. My last post spoke about a seizure I had back in July and from which I felt and it seemed as if I had bounced back from fairly speedily. However, at the end of August I had a much more serious seizure which resulted in a 16 day stay in hospital (three different ones actually) and I have now been home in Stoke recovering for 16 days as well. I am slowly slowly getting back on my feet but I think its going to be long and slow process, one of months rather than weeks.  There are lots of 'interesting' aftereffects of my second seizure, one is that I am inclined to burst into tears abruptly and for no real reason, although this might be the result of the myriad of different drugs that I am taking at the moment.  My sense of the passing of time is also a bit muddled, so i will zone out and minutes or even hours will pass and I won't notice and it will only seem like a few seconds. Sadly this isn't true when I wake in small hours and can't get back to sleep when time passes so so slowly. On the time front because my second seizure 'deleted' the time between the first one and the second one, and because my 16 days in hospital feel like 5 (I can only actually remember stuff from right at the end) and the 16 days back home also only feel like about a week, my internal clock is telling me its the end of July! And although I know, its actually the end of September, this just doesn't 'feel', right.  Physically I am feeling really really weak, this is what being run down and then over a month of lying down will do to you, I guess.

 I am also being to feel a bit down, something I am keen doesn't get any stronger.
My short term memory is also pretty shot, it is getting better but because I cannot remember how bad it was it doesn't really feel as if it were getting better to me.

On the other hand I am feeling really really loved I received so so many messages of support and comfort in the aftermath of what has happened but I have really been hit for six and it is going to take me a long time to work my way back. College has been amazingly supportive. And Emily was simply amazing. She not only caught what was happening to me from half way around the world, basically she saved my life. (And in true current form I have just burst into tears while typing). She has also been in near constant contact with me and is helping me regain my memories, talking me though our new flat as the picture in my mind that tends to come is of the old flat.

I am trying to find things to be positive about, and one is that yesterday I got to be a congregant at a synagogue for Rosh Hashanah, which is not something which I was expecting to happen anytime soon.

But I am feeling 'stuck' although I know I am not really stuck and that this albeit a setback will in turn pass, and I just need to be a bit more patient. Its just that I am not very good at being patient.

The memory effects are odd, I am getting better at 'getting the right answer to the question' and I know its right it just doesn't 'feel' like it has substance, on the other hand I have 'memories', from a year which is yet to happen and was (in my hallucinations) very strange indeed.

I am trying to stay positive, but at the same time not push myself too hard which would be totally counter-productive I certainly couldn't afford a third major seizure. One method I am using is to look for things I can learn from the experience, of which there are actually quiet a few. Both ones I will be able to use when I am ordained but also more academic things, I am thinking of writing a paper about my experiences when I more fully restored.

And a second as mentioned is the overwhelming amounts of care and love I have been given from my family, hospital staff my friends and colleagues from the present and indeed the past, matthew who was great and got me hospital and Emily who has been wonderful. I am also so grateful for the NHS and the doctors/nurses and other staff who work there.

So in summary it has been a scary time, and emotionally very stressful for me (and of course for those around me especially mum). I am trying to draw lessons from the experience(s) and to cut myself some slack. And most importantly not to get down or depressed because in the end all will be well if I have faith and just let things take their own sweet time. It has also given me an insight, albeit a minor one into what people in the community who are living with long term conditions are going though. Again I always knew, but there is knowing and there is knowing.

This was a rather more dramatic end to my 4th / start of my 5th year than I was expecting (I had felt things were running along quiet smoothly thank you.)

I hope that there won't be such a long gap between post over here on this blog and I also hope that I have less news to report. As I am medically ordered rest for the next few months this seems likely.

So to end on a, slightly, funny note. I have found that shaving and steroid induced tremors do not a happy combination make.