Genetic lesson in ethics

 There are moments in your life that hit harder than others and then, like any other kind of grief, it tends to fade or at least hits less often. 

This week I again talked to a A-level biology class about my life with VHL. The starter for this lesson is essentially a similar genetic profile to me and the students are looking at the ethics of genetics. I've talked about it before, but the teacher and I have this routine down now. We are a great team. I'm also surprised that 4 years on and several versions of this lesson and they are still always so surprised when I reveal I have VHL. I'm the person they advised that couple not to try for. the disease sounds so awful. And that the girl they know, my daughter was a surprise and 'happiest day of my life wasn't when she was born but when we found out she didn't have VHL' 

Classes obviously don't really talk about it out of the room. But I know from those students who I talked to later on it had a significant impact. One boy telling his mum (who then told me) he's going to go into genetic to find a cure. 

And thanks to a scan they also get to look inside my body. They have hard copies of my abdominal MRI. 

I am a teaching tool. 

Why moments hit hard is that of late I've been thinking about that nasty brain tumour, it hit hard. It was the worst and I stood in front of them realising I am past the main fear. I'm coping well and I am more optimistic. Yes today when I had a sharp pain in my head I suddenly let myself quietly freak out. I was doing a poo. My dad was diagnosed with one of his brain tumours because he reported pain when did did a poo. And just for a moment I drifted back to the room and the weeks of fear and utter hideous dizziness. 

whiskey

I'm watching a zombie apocalypse series. I don't like them. I don't like to think how easily so many people you know and probably love could turn and eat you. 

But what strikes me this evening is good well off the survivors seem to be. They have food and water, a roof over their heads. They seem to have a change of clothes. They also had a fair amount of whiskey. 

They had loss, naturally but here, where I am now this isn't fiction and they don't have this much. Cholera is killing people so much more than COVID ever did. Poverty kills even more than that every day 

It's hard to sympathize when the people in the film are in a better situation than the man I didn't buy a pineapple off today.

I'm not a good person 

prediction

 someone I know and respect has begun to read this blog. Exciting and a little unnerving. In response to his comment via email I  thought, well I should read those ones again as, understandably I can't remember what I wrote. And I kept reading, enjoying the memories and reflecting on them and then I see one about my dad and his wobbliness. 

At the time I had simply written that he probably had another 15 years in him. I was kinda spot on. 15 years. good guess hey. 

My little girl is 15 and a half. How many years do I predict for myself? Not my life expectancy. How many does she need? I know that we are making this move, partly to give her a step towards better independence. This week she asked if I would sleep in her bed with her. She didn't want to be alone. I obliged. I know what it means to be able to be there for her, emotionally and physically. 

we have a couple of secret messages we share, I of course won't say what they are but they are proof that we are who we are. No alien invasion. I have the same with my mum. we used it often. She would ask me them when I awoke from an operation. Imagine that, my mum checking I hadn't been replaced by a science experiment. 

I know that's not what that was. I have passed this onto my one. I'll be me always, we have our code. if there is an after life and I get shunted back to her I will be able to prove I'm me. A bit like 'ditto' in the film Ghost. It is ours. 

nope - not telling 

when you're sphished

This evening I'm shpishhed

It is fun

It is ok

It is fun

didn't bother

I went to bed early, I didn't bother with it. I am feeling low and worried about the year ahead. I haven't been able to book my MRI here and all I see when I look on the various types of media is the NHS crashing to the ground. 

I will probably have to book a trip to SA to get it done. I don't want to do that. 

I woke up several times in the night. The worries of the year ahead looming large. 

I have a list of what ifs I can't seem to shake. 

But I'm lucky enough to have rolled over to my husband and I told him and I cried. And he understood. I know that overall we'll be fine. We just will. White privilege and a healthy dose of affluent parents. But I'm just feeling so gloomy about 2023. 

We're leaving our safe haven and our escape from the harsh reality of all that the UK holds. 

I know I'm bored quite often, but I've had so many years of craving that, I'm not going to let it go easily. 

I also need to see a dentist. 

Urgh.