The Meeting

I feel really guilty that I'm so late writing about this since it happened way back in February!

Whilst I have this blog and the Facebook group for those who have Treacher Collins Syndrome as well as being a member of other TCS groups on Facebook I don't have any regular contact with anyone who has TCS in real life. I do have some vague memories of meeting other kids who have it when I was younger but those meetings were organised through our parents. I have become friends with a number of people who have it on Facebook but none of them live in Northern Ireland. However one of them, a young woman called Arti lives in England and we had conversations every now and again. She also helped me and gave me advice on that situation I mentioned before on this blog. She works for the charity Unique which help and raise awareness of people with rare chromosome disorders. She told me that they were organising an event for families with children with rare chromosome disorders which would be held in Belfast. We decided that we should try and meet up and fortunately we were able to to do so! I met up with her at the hotel they were staying in and we had a great conversation. I also met her boss and some of her colleagues.

It was definitely useful for me to sit down and have a conversation with someone who has the same condition I do but who also has had different experiences. We spoke about our home lives, our families, our work and our experiences with TCS. I think she is actually the first person I've met who has a BAHA (bone anchored hearing aid), so it was useful for me to talk to her about that. That said I'm still happy with my bone conductor hearing aid for now. All in all it was a great experience and would make me think about meeting other people with TCS or other facial disfigurements. The only regret I have about the meeting is that we didn't get a picture of the two of us together but hopefully we can change that the next time. She has given me her permission to share her twitter account:-https://twitter.com/Arti_K_Patel, she is much more active on twitter than I am!

Thanks for reading!

Wonder movie

Well this looks cheesy, cliche, inaccurate and overly cutesy, I will not be buying a ticket, not even out of curiosity. I thought Jacob Tremblay was great in Room but think it would've been much better if they actually got a child who has TCS or a similar condition rather than use makeup and prosthetics. I know they claim they were going to have a child with TCS in it but he had to pull out because of surgeries but can't see why they couldn't have got another boy with TCS.

"I've had 27 surgeries to help me breathe (no trach scar, he is very easy to understand when he is speaking), see (???), hear without a hearing aid (what? that makes no sense!),"

No offence to any Americans reading but it comes across a very American, overly cheerful, not very realistic, you know everything is going to work out in the end.

Comic book movies etc.

*|SPOILER ALERT FOR  BATMAN V SUPERMAN AND SUICIDE SQUAD*

Well I saw Guardians of the Galaxy Vol. 2 last weekend. If you liked the first movie you will definitely enjoy the second. I won't spoil anything but it is another great Marvel movie, it's not perfect but it's a fantastic way to spend 2 hours and 18 minutes. Marvel have really got this whole movie making thing down. BUT they can still improve in a few areas
1. Right balance of humour, Age of Ultron was irritating due to the sheer number of quips, not all of the jokes landed in Doctor Strange and Guardians 2 suffers a little bit from this as well
2. Post-credit scenes, they should really only be included if they set the scene for future movies or are really funny (note this does not include Howard the duck who only a minority of the audience will actually know...)
3. Villains, obviously the heroic characters are the focus but the bad guys have been a bit of a weak point in the Marvel Cinematic Universe. Loki has been the stand-out but he was given more screen time to flesh him out. I was especially disappointed with Ultron, in the comics the impression I got is that he is a massive threat and he never really seemed to be in the movie. He wasn't scary, he just quipped as much as the heroes.
4, A big sticking point for myself and other people who watch the TV shows both Agents of Shield and the Netflix shows (Daredevil, Jessica Jones, Luke Cage, Iron Fist) is the lack of acknowledgement/crossover from the movies. When asked about this the people behind the movies often bring up logistical issues but that is a bit of a flimsy excuse. The people who make the movies may not like the fact that the tv shows are being made but they need to suck it up and do something for the fans.

Really hope they make Thanos seem like a threat and an interesting character at the same time

Speaking of the tv shows, I haven't watched this season of Agents of Shield yet however I have watched all the Netflix shows so far. Daredevil is definitely the stand-out Jessica Jones is good but gets a bit dark and twisted and feels like it could've been a bit shorter. Luke Cage is also good but again probably could've been a bit shorter and the final show down is a bit lame. Iron Fist is probably the weakest shows, Danny isn't the easiest character to root for, the fight scenes aren't that great and the story is a bit all over the place. It doesn't help that it also uses the same group of villains that appeared in Daredevil only for them to feel rather lame in comparison to the original appearance.

Moving onto Fox, here is the review I did for X-men Apocalypse:
https://thegownatqub.wordpress.com/2016/06/03/film-review-x-men-apocalypse-20th-century-fox-2016/
Fox really need to keep making movies like Deadpool and Logan and stop making movies like Fantastic Four (the most recent one) and X-men Apocalypse. Not because Deadpool and Logan were rated 18 or R or whatever but because they were both fantastic movies.No doubt certain movie studios won't make that distinction...

Finally onto DC and Warner Bros. Let me just say that I enjoyed Man of Steel, it has it's flaws but I think it didn't deserve a lot of the hate that it got and it could've have acted as a good spring board for a Superman sequel/a larger movie universe. But of course they decided instead of doing a Man of Steel sequel or another character they decided to jump straight into  Batman V Superman movie which also attempts to introduce Wonder Woman along with other Justice League characters. The problem with having a Batman V Superman movie is that it leaves you in a corner where there needs to be a valid reason to fight and the fight actually needs to be good. Unfortunately neither happened. I was in a good mood when I went to see the movie as were my friends I saw it with but afterwards we were all angry that they had managed to make such a mess of these great characters. I could write a whole blog post about everything that is wrong with it. You have the idiotic things that happen for example the president authorising a nuke to be fired at Doomsday when Superman is literally in the process of punching him way out into space, Batman just straight up murders loads of people in the movie, it's hard to believe he has much a of a rogues gallery left at this point in his career. For those saying he is like this because of the death of his second Robin, Jason Todd (which we haven't seen yet), I would like to point out the fact that Robin was apparently running around with a flipping axe! Then you have Jesse Eisenberg's Lex Luthor, apparently Jesse doesn't watch his own movies, so I have to say I'm quite jealous that he didn't have to sit through his performance. I think he would've been perfect as the annoying Riddler such as he is portrayed in the Arkham games but not as Lex Luthor. Also can we talk about how lame it is that the reason he ends up bald is because he gets his head shaved in prison and it goes from a shaved head to completely bald for no reason!

Lots of cools shots for the trailers, shame the movie was rubbish!

Suicide Squad wasn't quite as bad but only because of lowered expectations and the fact the characters aren't as well known. That said it isn't great, Jared Leto's Joker is lame, the other villain is a bit rubbish as well. It obviously tries to copy Guardians of the Galaxy with popular song after song but it just comes off as a bit silly. Then of course their is the finale and the ridiculous slow motion moment. I want all these movies to be good but unfortunately whilst Wonder Woman looks promising other than the fact it looks like it might be a CGI mess of a finale like Batman V Superman, I have low expectations for Justice League. Batman trying to be funny, overly macho Aquaman overcompensating for the jokes about him being a lame character, Cyborg is now apparently an Iron-Man rip off not to mention his body is 90% messy CGI, the over-use of obvious CGI and green screen, and Ezra Miller's Flash. Obviously I may be a bit biased due to being a fan of the TV show but I don't like the movie's armored costume (you would think a CSI who wants to keep his identity hidden would wear gloves...), the fact that his lightning is now blue (why?!) and the fact that it shoots out all over the place like crazy even when he isn't even pushing himself. Also a bit annoying that they seem to be doing the same story that his dad is wrongly in prison for the murder of Barry's mother. I hope to be proven wrong about these DC movies but I fear I won't be.

Can't imagine it's comfortable to run in...

Thanks for reading, I'll try and have a non-superhero post up soon as well.

Halfway to 50!

Well I recently celebrated my 25th birthday and it feels weird to now be in my mid-twenties. To be honest I haven't really done much to celebrate my birthday in recent years, it's hard not to feel that trying to organise people for a party or a night-out or whatever is a chore and then you feel a responsibility to make sure other people are having a good time on your birthday! This year I finished work early and I met up with a friend. We went to see John Wick 2 at the cinema which was brilliant (early afternoon is definitely a good time to go to the cinema as well!) and then went to a bar and did some catching up and played a bit of pool. He then had to go to work so I went home and had a lovely Indian takeaway with my family. We also went out for a meal at a restaurant as is tradition in our family on another night which was very nice.

As to what else I have been up to since my last update in January...I continue to work away at my PhD, unfortunately still haven't managed to finish the current section of work I've been working on but will hopefully have it all written up soon. I have been getting ready to start the next section and have to say I'm rather looking forward to getting back into lab work, though I probably will regret saying that once I'm back in a few days and am knackered from rushing about doing DNA extractions and PCRs. I am going down to Dublin soon for another conference but this time I have decided to give a talk on my work rather than just present another poster. It is a fairly small conference and it is directly relevant to the area I work in however it is difficult not to be nervous.

Our music group where I work/do my PhD is still going strong. The guy who brought us all together very kindly invited us to his house at the start of March so we were all in a room with a drum set, amps and microphones making music which was a lot of fun. We continue to play together on Monday nights and are thinking about trying to write some original songs. In some ways it has helped to revitalise my love for playing music. It has also made me think about taking better care of my instruments so I actually changed the strings of one of my electric guitars for the first time by myself and I have to say it looks a lot better after giving it a good clean.

Picture of me from the jam session, we had a laptop connected to the tv showing chords and lyrics

I know I don't really update as much as I should but I only feel like writing when I actually have something to say. That said I recently bumped into someone I knew from school who reads my blog so it is nice to know that people do read it. I like to think I have helped give at least some people an impression that people with Treacher Collins Syndrome are just normal people. Hopefully people with TCS or other conditions find it useful as well.

Thanks for reading!

Not so January blues

Yes I know it's almost a month since Christmas, I have been rather busy/not in the writing mood. As much as it sucks when Christmas is over and you have to go back to work I didn't find it too bad this year. I think it was because I have now reigned in my expectations about Christmas now, yes it is good, it is great to see family, and get presents and eat lots of lovely food and relax but it always goes by very quickly and the next thing you know it is over and you are back working. As always my parents were too generous in their gifts, I got various bits and pieces including books, CDs (yes I still get CDs, I like to have something physical rather than just a file on a computer), a new coat (mainly for dog walking and of course my first time back at the animal sanctuary since Christmas a dog managed to rip a hole in the coat!). My parents got me Overwatch on PS4 which is seriously addictive and my brother got me Batman Arkham Knight which I'm also enjoying. As part of my presents I got money towards getting a tablet. I like doing research on potential purchases but I have to say it was seriously difficult to narrow down my choices to a tablet that fit my desired criteria. In the end I decided on a Nvidia Shield K1 tablet which I'm definitely happy with so far.

In terms of my PhD I am close to finishing another section of it, though I still have a mountain of work to get to before the end. I definitely miss the days when my supervisor and other people were here, it seems a lot of time recently I have been the only person in the lab/office for large parts of the day. It doesn't help that the lights in the lab go off after a while if they don't detect any motion so if I'm in the office it feels rather isolated. That said it's not all doom and gloom, one of the researchers/lecturers has set up a musical group, so I now go to jam sessions on Mondays. We have each nominated songs to work on and we are planning to rent out a proper band rehearsal room at some point down to play in a proper setting rather than the lunch area at work!

That's pretty much what is happening with me at the moment, my PhD, my music group, five-a-side football on Tuesdays (if we can get the numbers and if I'm free/feeling up for it/its not bucketing down!) and I try to go dog walking at the animal sanctuary one day at the weekend. Being busy lately has made me feel a bit guilty that I spent so many weekends previously just loafing about the whole time. That's hindsight for you!

Thanks for reading. I'll maybe get around to writing a post about movies I've seen recently and comment on what I thought of Batman V Superman and Suicide Squad which I'm sure those of you who have read my many posts about superhero things were wondering why I hadn't posted anything about them yet. Spoiler alert, its because they were pretty awful!

A conference attended and Christmas closing in

Well it's been over a month since my last post and the time seems to have flown by. At the end of November I attended a conference in Sligo along with a group of other PhD  and researchers from my university. It was technically only one full day but felt much longer. We drove down in a minibus on the Thursday, a long drive made longer by the dark and the cold and the fact I managed to drop my ipod below one of the seats and wasn't able to retrieve it until we arrived due to the cramped nature of the bus. I have to say the hotel was very nice, my room was massive considering I was the only person in it! I had a large bedroom with a double bed and a single bed, a living room, a small kitchen and a good sized bathroom. We had dinner in the hotel and then walked over to the campus where the conference was being held for a talk by one of my supervisors and then a "welcome reception". Friday was very full on, early start, talks started at 9am and went onto 5pm with workshops in the afternoon (with breaks for tea/coffee and lunch). Then there was an AGM of the organisation's whose conference it was. Then there was the poster presentation, I had made a poster for the conference so people walked around and looked at the different posters and spoke to the people who made them. Unfortunately I didn't win the best poster prize but it was good to show off my research and to discuss it with different people. After that I had to make a mad dash back to my hotel room to leave my notebook and other things back before rushing to catch up with the people walking into Sligo for the conference dinner. I wonder if these things are actually ever good? I've been to two now and the food wasn't great apart from the dessert. It's not the best environment for someone with a hearing aid and someone who's speech people struggle to understand, trying to talk to people across a large table in a very noisy room. I ended up walking back to the hotel in the freezing cold while most of the others went to some bar (I found out the next day they couldn't get into that bar, went to another bar, had one drink and then got lost on the way back!) Saturday morning was a bit of a struggle, was running late due to having to check-out and then had to roam around the campus looking for a way in since the doors we used before were locked due to it being Saturday. There were some more talks, a prize-giving and then a quick lunch before we had the long drive back to  Belfast. Thankfully it was a lot more pleasant especially since I kept hold of my ipod!

The lovely Sligo Clarion hotel

My luxurious bedroom

Me and my poster

The lovely dessert

Back to my PhD itself I have been continuing to work away and I'm close to finishing the work on my third species and will hopefully have it completed soon after Christmas. I did receive the welcome news that my second paper has been published, again I must say I do not expect anyone to purchase it but I've included the link to it below just so you guys can see it:
Broad-scale genetic homogeneity in natural populations of common hazel (Corylus avellana) in Ireland

It is hard to believe that Christmas is in two weeks, I have to say I don't really feel very Christmasey yet despite putting up our Christmas tree today, the mild weather doesn't help either. I am looking forward to it, that said I think there is a problem that it is always over hyped. Christmas day itself always flies by and the realisation that it is over for another year is always depressing. That said I am looking forward to time off, presents and of course lots of delicious food.

Hope you all have a great Christmas/X-mas/holiday, hopefully I'll write more posts either this side of Christmas or more likely after.
-James

Another couple of months gone

Well summer is definitely over, its cold, the nights are dark (and possibly full of terrors) and there is already talk of Christmas! I'm not even going to apologise any more for the gaps between my blog posts, I think both myself and my readers will just need to realise that there will not be a fixed schedule for my posts and they will appear when I have the time and willingness to write them. I have been quite busy since the last post. I was away for a week with my parents, we went down to Enniskillen in County Fermanagh for a few days which was nice, the highlight probably being the boat trip we took which stopped off at Devenish Island. We then went down to Dublin, my first visit other than very brief one to see Fall Out Boy live for many years. I was a bit taken aback at just how busy it was. We did a lot of walking about, did some shopping, had a walk through the university and saw Bill Bailey at the same venue I saw Fall Out Boy. For those who don't know Bill Bailey is a British comedian who does stand up comedy along with various musical things. He is extremely talented and we were all in stitches by the end of the show.

We also took a short weekend break down to the north coast a while back which was nice, I've uplaoded pictures to my flickr account:
https://www.flickr.com/photos/136005436@N02/albums

In terms of my PhD I had a frustrating couple of months sorting out my data, doing analysis and then writing up my work on hazel. The paper on that has now been sent off for review before hopefully being published. I have now moved on to my next species and have been working away in the lab. As much as it is nice being back in the lab it is also rather tiring and the two busiest days are Thursdays and Fridays when doing DNA extractions. Unfortunately at the moment I'm forced to do DNA extractions most days since the machine I need for the other stuff is broken. I'm now in my final year (of being funded) which seems rather crazy. After having the lab to myself the majority of the time since my supervisor left along with the other person who worked in the lab (along with the other PhD students finishing) I'm now sharing the lab with a number of new people. This was to be expected as the lab wasn't being used to its full potential, that said the increased noise/activity is difficult to get used to.

I thought I had mentioned before but I can't find anything after a quick look. I have started to volunteer as a dog walker at an animal sanctuary. I had actually done it many years ago for the volunteering section of my bronze Duke of Edinburgh award but stopped a while after. I realised that I was spending my weekends mostly loafing about so decided I should start volunteering again and maybe meet some new people in the process. Given that it has been many years since the last time and the whole health and safety thing going into overdrive I had to take part in both a general induction as well as a one to one induction. That took a while since they were only put on a few times a year but eventually attended both of them. I've been up quite a few times since and it has been mostly enjoyable. Only frustrating thing is when you go to walk a dog only to find that someone else has taken it out without filling in the sheet properly.

That's what's happening with me at the moment, thanks for reading.