CVI Society Convention 2016

Hi so today is Saturday so that means I did my speech at the CVI Society Convention 2016. I think it went well. I think I may have plugged my blog a little too much, but I was so tired by the end of the convention and just because my memory is poor anyway, that I actually forgot who I actually gave one to! Like there were some people who I spoke to quite a bit so I knew I gave one to them but the people I only briefly met, they all sort of blurred into the same person.

As I think I have said before CVI is probably one of the most common types of visual impairments but it is not well understood because 1. Its the brain not the eyes and sometimes people don't believe its an actual condition. 2. Because its the brain, not everyone is exactly alike. Similar symptoms, for example you have a cold there is the symptoms of a runny nose and sore throat. But with CVI not everyone has the same set of issues and symptoms. 3. CVI is normally part of the problem. So for me I have CVI but I also have hydrocephalus and my other issues. So its for the most part never cut and dry.

I really enjoyed this convention. I met some lovely people and 3 young men who are around my age which is nice to see because I don't really know people my age with it. There were quite a few parents and professionals there too. I wanted with my speech to prove you can live with CVI. I feel quite grateful that I can't remember anything but having this vision. So I don't know what having full sight is. This is my normal. Like I said in my speech I know how life is short and you don't get any do overs. Life doesn't stop for anyone.

It was really nice to see professionals who get it, its quite refreshing considering I don't think my opthamoligist actually believed in CVI. I only really heard of CVI through my visual impairment teacher at the time, on her yearly visit, brought it up thinking maybe this is the answer. I learnt that visual impairment teachers can't actually diagnose CVI, an opthamoligist has to. Which to be honest I think is a little strange considering, in practise, that a visual impairment teacher will see the person using their functional vision and how they get on with daily life. Whereas the doctors only see a snippet out of someones life and it may be somewhere this person is very familiar with. I feel like those professionals who went, they're going to help so many families by taking the time to come to something like this. And taking the time to further their knowledge on CVI and what they can do better and to help people.

I met Janet who was really lovely and helpful. I couldn't organise it! When you think about it this is only the second convention the charity has done. There was wristbands, a raffle and even a Q&A.
So my speech slightly run over, after all my practising to keep it short and sweet but everyone didn't seem bored by the end which was good!

My mum and I stayed the night before because it was an early start. We got to Harrogate at about 2:30 after a few late trains and nearly missing the connecting trains. Then we did a bit of shopping. £63 worth in Lush. Let it be said I love Lush. We don't have one that near me so it called for it. I then brought a face mask, a cat sheet mask type one, my mum took a picture before we went to bed and we were in hysterics. Oh and I also bought A Streetcat named Bob. I really want to read it before the movie. At the same time as I was in Harrogate it was actually the premier for the movie so unfortunately I missed it. Bob and James were at the premier and so was Duchess Kate! I saw this book ages ago, I think around the time I'd got my cats but never thought to pick it up. I think I might do a separate post about why I feel so strongly positive about A streetcat named Bob.
Then we headed to the hotel and checked in and had a relax before we went down to the bar because we arranged to have dinner with Janet and everyone who had arrived the night before. We arrived at the hotel around 5:30 so we had a couple of hours to relax before we went to dinner. At 6:45 we headed down to the bar to meet Janet, as usual we either arrive really early or late. No in between. Then we met Janet and her husband, who were both really nice. There is a Facebook forum for the CVI society but because not everyone has a picture of them as their profile it was nice to put faces to names. Then more people started arriving, and we got chatting to people. I had a really nice conversation with, sorry if the name is wrong my memory is poor.
Then we went into the room where we were going to have our dinner, I didn't really like anything on the main menu but luckily the chefs were happy to cook me something from the bar menu. Then I started speaking to Tim, who is one of the trustees and was the tech person for the convention. I feel like the people I spoke to must have thought I talked a lot. Although I'll admit the days traveling caught up to me so not long after pudding, we went to back to our room. I'm not an early riser usually so I had to make a concerted effort to be up early as the convention started at 9:30 and I was on not long after.

So next morning I woke up early and we got ready and headed to breakfast. We also took a look at the room where the event was mainly taking place in. There were way more tables then I thought. My mum and I headed up to our room to get my speech and a moment to breath and then we headed down ready for the event.

I was on second after an opening speech by Janet. I was quite nervous, but I did it and people laughed at the funny bits. Which was what I was most worried about. So I did my speech and I think it went well. So then we had a few more speeches from professionals, like Professor Dutton, who I think was almost like one of those crazy scientists, in a good way. It was strangely fascinating because a lot of what he was saying made sense.
Then it was a break before workshop and my mum went to check out and I waited in the convention room. During that time I had quite a few people come up to me and complimented me on my speech and asked, or more me offering!, for one of my business cards which I had specially printed. Free promo for my blog and youtube. It was funny to hear that my speech was quite inspirational to people. My life to me has been normal and in that sense I'm glad I have no memory of seeing normal. I don't know the difference so when people say things like I'm inspiring I just think well I know no different than to just get on with things. Like I said in my speech, life doesn't slow down for nobody and we don't get no redo's. I know life can be taken away in an instant.
But I can also see that to these professionals and parents I am proof that don't always believe what the doctors are saying. Believe in your child. That every milestone is important and the only person who can limit them is them. That it may be a little harder to get to certain goals. But getting there will feel all that more victorious. Nothing is impossible and every achievement is to be celebrated. Not to say there won't be rough moments and dark moments but life is to be cherished and every life is valuable.
I think that made sense. Its hard to describe.
A cool moment was when one of the parents said her daughter wants to be in Wicked as well, who also has CVI. It made me feel less ridiculous for wanting that. I sometimes feel like this goal, to be an actress is ridiculous. Disabled people aren't that successful in it. I don't want to be defined by my disability. But I know disabled people are always going to be in the minority and we are always going to be portrayed as not being that successful or able to do it until someone comes and paves the way. Changes that and proves, I can play that role just as good as anyone else.


Then it was the first workshop of the day, by this point we had checked out of the hotel room so we couldn't go lie down. So since we felt a little stuffy, because it was warm in there. We headed to Harrogate town centre. Which was 2 minutes in a taxi from the hotel. I also bought myself a little treat for doing my speech. There was a Space NK. I know how luxurious. I call it a posh debenhams. It goes Debenhams, Selfridges then Space NK in poshness. I went in there the day before because I wanted to get a Becca highlighter and I didn't see it. I went in and asked and she showed us to the little counter, apparently I hadn't spotted it even though I walked right past it the day before. So I got the Becca highlighter in pearl, even though I asked for opal but I think now that opal might have been too dark for me. I also bought a Nars concealer. We only had about an hour before lunch break. So we went to get a costa takeaway but they didn't have my drink, peach lemonade and the caramel shortbread cake I have my mum just got a coffee. Then we headed back to the hotel.
We had lunch and I spoke to a lovely lady called Jen/Jan and spoke about my dream to be Elphaba and how her daughter works in acting/west end.
We then headed into the afternoon workshop and I wasnt sure what we were meant to do. Apparently
it was a Q&A for professor Dutton and Janet. They asked me a few questions before asking them to me to gain my opinion but to be honest I don't think I was that up to answering questions.  I was shattered. I tried though. Then after the workshop there was a big Q&A and a raffle. Then closing speeches and then it was over. We had a chat with Janet, who kindly said her husband would take us to the train station. I got quite a few leaflets to hand out, I went to get my eyes tested on monday and I plan to take some leaflets in when I pick my glasses up. Yes i've got new glasses, they're quite funky.
We bumped into some of the people from the conference which was interesting as one of them was part of the national autistic society and is an expert in Autism. Which as my brother has aspergers is quite interesting. I noticed a interesting link between autism and sight impairment in general. Its quite interesting. Although there was a discussion at the conference of people being misdiagnosed as autistic when really they have CVI because some of the symptoms are the same for both.

Then we got the train to leeds, which all the trains we managed to get on alright. Then the train from leeds to home. We got home around 8:30 - 9pm. I had a chinese because I was starving then I went to bed. Mu dog Pearl was so excited to see us. My mum and I agreed we'll defiantly go next year, apparently it might be in bristol that area. We might all go as well.
I want to say a special thank you to Janet for inviting us, even though we would of come anyway. Thank you we had a really lovely time, it was lovely to  meet people who are in similar boats as us. To relate to people.

Until next time,
Sophie