News

Sophie Tennison’s Blog 2

Hi it's me, again. So, a quick update as I know the first blog I did I mentioned that I was waiting to hear back about college and the National Youth Theatre. Well I didn't get a place in college, I am on the waiting list though, as they were so over subscribed. But I got into the NYT! I know I am still stumped. I'm finding it hard to believe. I have sent off all the paperwork that needs to be done and am currently in the process of raising the money for the course so cheeky promo but I have a fundraising page because I am not rich and it is expensive. If you just shared it, it would mean a lot!

www.gofundme.com/3s1drpk

Fun fact, did you know Johnny Depp and Judi Dench are visually impaired. Yeah neither did I, and well they've done well for themselves. We can be anything we choose to be.

Little fun anecdote before the actual blog. I went to see the Heathers workshop that was in production, google it and you will find out its one of the best musicals ever. What I would give for it to come to the west end and for myself to be in it! Ha ha. But I digress. We got onto this busy train to go home afterwards. A little bit of context, a trespass incident had happened at a central stop for most of the trains, which had caused trains to be majorly delayed so as soon as a train was announced people crammed onto the train. And we were already running late as a man collapsed just after the first song. We all had to evacuate the room and wait for it to start again. From the beginning. So, it finished later.

Now when you work with guide dogs, or any teacher of the visually impaired, they tell you that on public transport i.e trains, people will move for you. Well I spent a good half an hour of this journey standing with people shoving me and squeezing past me. Not that there was anywhere to go. Nobody moved, they all saw my cane. Not one. It was only after my mum mentioned it to a fellow standing passenger, who then said to an Italian teacher travelling with about 30 students that I needed a seat. My mum would have done that but it's a bit hard because I didn't want people to get into an argument. But once someone else mentions it, it's hard to say no, that you'll be fine. So eventually I got a seat. But some of the students were laying on the floor of the train aisle. I was so worried I would have to trample on them because our stop was coming up. It angers me because it is one of the first things you get told when learning travelling as a visually impaired person. I mean I dread to think what would have happened if I was on my own.

Then the London Bridge and Borough market attack happened and to be honest I was a little stunned, we were only in London about half hour before.

I guess I should tell you a bit more about how I came to be here. Like how I got my CVI diagnosis because I know that just getting a diagnosis can be an uphill journey. I also want to talk about living with CVI and sight loss in general. I don't know how much I'll cover in this post so it will be a few blogs worth probably.

In 1999, when I was one I was diagnosed with a medullablastoma, which is a malignant tumour located at the back of the brain in the cerebellum. Strangely enough the doctor who would go on to treat me had just got back from a conference about a treatment course for the tumour that I had. It involved having a Ommaya reservoir inserted into my brain, which is still in my head, and giving me chemotherapy through there. It is no longer a treatment plan though, as it was quite toxic. I also had surgery which involved removing most of my cerebellum so I don't have the greatest of balance. It is true though when people say the rest of your brain compensates and makes up for it. In theory, I shouldn't be able to walk or stand because I have hardly any, if that, of the cerebellum part of my brain remaining.

The chemo, even though it was highly toxic, and surgery worked though because I have been cancer free for about 18 years. Touch Wood.

My next blog will tell you more about the issues I faced after my treatment.

Thanks for reading,

Sophie

CVI Society

The CVI Society is entirely run by people giving up their spare time to share information and support others.

If you can provide funds for the things we cannot get for free then you can help us to help others.

Newsletter