Christmas Update

Hello, first of all I want to apologise for the lack of updates, I have had some ideas for things to write about but to be honest I haven't really been in the mood. I've been working away at my PhD since the last update, I think I've settled in a bit better and I'm now a bit more confident about what I'm doing. It was quite a short semester so after Christmas the real work begins including lab work, planning field work, carrying out field work to collect samples as well as continuing to do lots of reading and working on my thesis. Before finishing for Christmas I had to do a presentation (as did all the other first year PhD students) on my project and the work I had done so far. It was to be 10 minutes long with questions afterwards. I have to admit I was rather nervous but I think overall it went well despite rushing slightly at the end and maybe asking too many rhetorical questions" What is the problem? what is the current plan? what am I doing? etc." My friend said that I seemed much more relaxed than in my project presentation in the final year of my degree which is a good thing, I was also able to answer the questions that people asked me.

Another reason for my lack of updates is that the last few weeks have been rather busy with the PhD presentation, I went to see both Kasabian (amazing) and Embrace (decent) live as well as attending a gig organised by my brother for his website featuring three local bands. I also attended a Christmas party for PhD students and staff members as well as catching up with one of my friends who I haven't seen for a while. I've got one more night out with people from my lab to go to which I'm looking forward to as well as Christmas itself with a chance to relax without having to worry about work.

Merry Christmas and thanks for reading.

Superhero Madness-Part 3

There has been some pretty big news in terms of movies lately but first I want to talk about TV shows. First Agents of SHIELD, I wasn't fussed on it at the start but thankfully as it has gone on it has improved. That said it still could be better, the problem is that it is part of the Marvel universe on a TV show budget so even though it ties in with the Winter Soldier for example (unlucky for anyone who hadn't seen it before watching the show) it feels a bit disjointed and limited. That said the first two episodes of season 2 have been much improved, they've made some tweaks in terms of characters, there has been some pretty cool effects, a cool bad guy and interesting plots and mysteries set up. They have teased some pretty cool things since the start of season 1, it will just be interesting to see how they all pay off. 

Arrow season 2 continued the progress of the second half of season 1 to be great, managing to balance numerous plot lines with great acting and great fight scenes not to mention a great villain. Stephen Amell deserves special praise for successfully portraying three characters, Oliver in the present, Oliver in the flashbacks as well as the Arrow. The writers also deserve praise for not going down cliche routes, there have been a number of times over the course of the show when I've expected something cliche to happen only for them to do something better or unexpected. My only criticism of season 2 is that at times it felt like there were maybe too many characters and some were being neglected as a result but that has improved as the season went on. The first episode of season 3 was good although it had to fit a lot in.

The first episode of the Flash (which is in the same tv universe as Arrow) was good, I like Grant Gustin as Barry, hopefully the side characters will be more developed as the show goes on. The special effects are decent but obviously not as good as a high budget movie. My only criticism is that it packs a lot in so it seems a bit rushed but its good to get the origin out of the way and the tease at the end of the episode is very interesting indeed.

If three superhero shows a week wasn't enough we also have Gotham (and Constantine though I haven't watched it yet and its only available on amazon instant in the UK). To be honest I was very skeptical about this show, a Batman prequel, not connected to the Arrowverse nor a prequel to Ben Affleck's Batman, not to mention hearing about all the villains that were apparently going to show up before Batman even existed. That said I've quite enjoyed watching it so far, its not amazing or anything. It could do with being a bit more subtle for one thing (yes we get it Bruce will one day become Batman, Selina will become Catwoman etc.) but it is a decent start and it will be interesting to see if it improves with time. 

Where's Jim's moustache?

I also want to praise two animated shows, Young Justice and Spectacular Spider-man, two great shows that were cancelled after their second seasons for stupid reasons and from what I've seen are miles better than the current Marvel and DC cartoons. Spectacular Spider-man although it looks a bit childish is actually a very good modern take on the Spider-man story. It was cancelled because the animated rights reverted back to Marvel from Sony who replaced it with the awful Ultimate Spider-man which is nothing like the comic of the same name. Young Justice is set in a world where the Justice League have been around for quite a while and are well established. The show focuses on a group of sidekicks who are not ready to join the League yet but who want to form their own team and go on missions. Do not let the fact that the show is focused on a team of sidekicks dissuade you from watching it as it is amazing. There is great action, drama, tragedy, comedy, there are appearances from a vast range of DC characters both good and bad, there are androids, aliens, clones, betrayals, double agents and time travel, not to mention strong female characters which made the show popular with girls as well. Apparently they base a show's success on toy sales and apparently girls don't buy toys, and this was one of the reasons they cancelled it, it wasn't the fact that they put it on at weird times, had large gaps between episodes or that the toys/merchandise for the show was mostly rubbish. There have been social media campaigns to bring it back but it doesn't look likely we will get a third and final season, the writers must have thought they would since the final episode of season 2 sets up the story for a third season. I still highly recommend it though and I hope even if it does remain cancelled that they take inspiration from it for their movie universe as it does so many things very well.

How was this replaced by Teen Titans Go?!

PhD

Apologies, I know it has been over a month since my last update but I've been a lot busier now that I've started my PhD. Its been rather strange getting into a regular routine after not having one for so long, have to say I haven't been enjoying having to get up so early. I haven't really done much lab work yet its been mostly reading and refreshing my memory on the theory behind the stuff I'm working on. I've also had to spend a fair bit of time at induction/introduction seminars  as well as a training course for being a practical demonstrator. Basically PhD students are expected to help out with undergraduate practicals. The lecturer is in charge and he or she goes through what the students are meant to be doing and then the demonstrators go around the room and help anyone who needs it during the practical. We get paid for it which is great and we get paid extra if we have to do marking on top the practical. I'm glad I'm only scheduled for one a week though as they are quite draining and they can last up slightly over 3 hours or longer if you are marking so you have less time for other work.

I had my first practical demonstrating session last week. It was rather surreal as I did the exact same practical in the first year of my degree. The lecturer did things a bit differently in that he assigned each of us to a group of students. It was a bit awkward at first, obviously they were nervous as it was their first practical and I was nervous as it was my first time demonstrating but once things got started it was fine. I did have to repeat myself a few times as they weren't used to me and maybe didn't understand me that clearly, I also had to ask them to repeat some of their questions as it can get quite noisy during a practical.  It was an introduction to microscopes practical and to be honest I hadn't used a microscope since the second year of my degree, that said I think a bit of muscle memory kicked in and I was able to help them find what they were meant to be looking at on the microscope slides and answer their questions. I also got my first taste of marking which was interesting. I had my second session this week, it was a different lecturer who just let the students sit wherever they wanted which was slightly annoying as it meant you were dealing with a lot of different students. I got the impression that some of them were reluctant to get help from me, they'd look uncertain but after I walk past they'd put their hand up and get help from one of the other demonstrators, which is a bit disappointing. Despite this I do think it has been a good experience for me so far and hopefully over time they will see that I'm happy and able to help.

Thanks for reading.

How do I use one of these again?

Mallorca, movies and music

Well I can hardly complain about my summer being boring.. I went on holiday to Mallorca with my family for 12 days. The weather was glorious, very hot but with a bit of a breeze. Our apartment whilst a bit smaller and with lots more people around it than previous years was very nice. We had our own private garden for sun lounging and there was a large shared pool just a few steps away. I thought the food was a lot better than last year, though I think the meal I maybe enjoyed most was the barbeque we had in our own patio/garden. It was a very lazy holiday but it was nice to just relax and not have to think about anything really, of course I read through a lot of books as I usually do on holiday. The travelling both to and from was fine apart from having to get up at 4am to get our flight there but it meant we arrived early in the day and not at night which is often confusing and not that nice. We were also able to fly back early on our last day which was fantastic as unlike other years we didn’t have to hang about and change appartments etc.

After going for long periods without really going to the cinema I've been four times in recent weeks. The first movie I saw was Dawn of the planet of the apes. I really enjoyed the first movie and the second is definitely bigger and arguably better. The cgi/motioncapture for the apes is amazing, they look so real. The actors who portrayed them definitely deserve major props especially Andy Serkis and Toby Kebbel. There is plenty of action but there is also some quieter moments which is good.

Hail Cesar!

The second film I saw was the Inbetweeners 2. For those outside of the UK who do not know, the inbetweeners started off originally as a TV show following the exploits of four teenagers who aren't nerds but who aren't popular either hence the name inbetweeners. The TV show was three seasons (6 episodes each season).  It is a very funny show but also rather crude with many very awkward moments. I had enjoyed the first movie and I can say the same about the second. Its very crude and I wouldn't watch it with my parents but it made me laugh out loud. Its not perfect but if you like the show its definitely worth a watch.

I also saw Guardians of the galaxy, the latest film in the Marvel Cinematic Universe. Unlike the Avengers they aren't exactly well known outside of comic book fans and even then they aren't that well known so it seems like Marvel took a risk making this movie. Thankfully the risk has paid off. Granted it feels a bit strange to go from Captain America: The Winter Soldier to this and there is some needed exposition at the start but you soon understand who's who and what's happening. It quickly becomes clear that this is quite a quirky film, a bit different from other comic book movies. Its part space opera, part comic book movie part comedy. All the actors have been cast well and all have their moments. I have to admit I was a bit skeptical of Bradley Cooper and Vin Diesel being cast as Rocket and Groot but both do a great job. The soundtrack is full of  awesome songs from the 70s and 80s and is actually a part of the story.  Of course the action is fantastic as are the effects. My only criticism is that Marvel seem intent on sticking to the 2 hour length on these movies, this means that as with Thor: The Dark World the villain isn't quite as developed as he could be. Of course this is a small criticism for a movie which is very entertaining.

A female assassin, a talking racoon, a human renegade, a walking tree and a warrior walk into a bar... 

Most recently I saw Lucy starring Scarlet Johansson. It is simillar to Limitless that it is based on the premise that we only use 10% of our brains (this is wrong). Its definitely not as grounded as Limitless so you have to suspend your disbelief but it is exciting and it looks great.

As well as seeing four movies recently, I've been to three concerts. The first was Biffy Clyro at Belsonic festival (a series of concerts held in Belfast). This was the fourth time I've seen them live and they were brilliant as always. The support acts were Little Matador the side group of Snow Patrol’s guitarist-Johnny McDaid. They are a lot heavier than Snow Patrol, they have some decent tunes. The main support was Twin Atlantic, they are often compared to Biffy but tbh I am not that fussed about them.

I also saw Queens Of The Stone Age for the second time, they were also playing Belsonic on a different night. I think I enjoyed them a bit more this time due to the better atmosphere, though have to admit I'm not mad about being in such energeic crowds. They were supported by The Minutes who were ok and Brody Dalle (QOTSA singer's wife) who was pretty good.

Note the people watching from the appartments

Finally I was at the first day of Tennants Vital 2014. For whatever reason there was only three bands this time around. The first was Go Wolf, a local band who sounded great but not many people there knew them. The second was Bastille who were put on a good show but I'm not sure I would go to one of their own concerts. The headliners were the Killers returning to Northern Ireland and this was the third time I've seen them now. It was the last date on their tour and they seemed to be having a great time and  so we did as well. They even did two Northern Irish covers, teenage kicks and brown eyed girl. I think I definitely enjoyed it a bit more than the last time I saw them.

Whilst Bastille were on, was a lot fuller by the time the Killers were on

Thanks for reading.

Reintroduction

I thought whilst doing the previous post that I should probably reintroduce myself since it has been several years since I started this blog. I also thought it was about time I shared some proper pictures of myself so people can see what I actually look like.

Out collecting leaf samples for my PhD

Hello, my name is James, I am 22 years old and I have Treacher Collins Syndrome. I have what I would consider a medium case of TCS in that I am affected by it and it is noticeable but it is not severe. I wear a bone conducting hearing aid in order to hear properly. Over my life I've had to have several operations such as to fix the hole in the roof of my mouth, a jaw distraction, insertion of a trach and feeding tube. (which was removed many many years ago) I currently live at home with my parents, my older brother and my cat and I'm about to start a 3 year PhD research project looking at the population genetics of native Irish trees.  My hobbies include playing guitar, playing video-games, watching tv, reading (books and graphic novels/comics) and football (both watching and playing). 

Malta

This me dressed up for my university graduation

This is me just before Tennants Vital 2012 standing in front of a poster

5000 views!

Well I've been thinking of doing this post for a while but I wanted to make sure I definitely had 5000 views since google/blogger seems to like signing me out and forgetting that I ticked the "do not track your own page views" option. It's hard to believe that I set this blog up over three years ago. I decided to set up a blog in the first place since I had started to look more into my condition including personal accounts/websites/blogs on the internet. I noticed that there weren't really many blogs out there especially not written by people of my age and those blogs/websites that were there hadn't been updated in quite a while. I guess I wanted (and still do) to raise awareness of TCS, hence why I did the reddit question and answer session a year ago. I hope I have and will continue to raise awareness not only that Treacher Collins Syndrome exists but that those who have it are people like everyone else with emotions, opinions, hobbies, friends, families etc.

Since I've started this blog I've had a number of people contact me about certain opportunities. I had a woman asking if I wanted to do a magazine interview sharing my life story in one of those tabloid magazines. I've also had someone ask me to essentially advertise their disability dating show for them hence doing their work which I refused. As I have stated before (I think) I'm not enabling ads on my blog  even though it would make me a bit of money so I'm not going to start doing someone else's advertising for them. Last year I was contacted by someone who was also working for a disability dating show possibly the same one and asked if I was single and if so would I be interested, I politely declined this offer as well. As much as I want to raise awareness I am not comfortable going on TV or doing an interview with some stranger, this blog lets me do things on my terms and at a pace of my choosing.

Thankfully it hasn't all been offers of dating shows and magazine interviews. Thanks to this blog I've become friends with someone with a lot of similarities and we have been able to share experiences. We also discovered that by coincidence our mums exchanged letters with each other when we were very young (my mum exchanged letters with other parents who had kids with TCS, obviously there was no Facebook in those days). I've also had some nice comments about my blog as well as some disagreeing with my opinions on things which is to be expected, it is the internet after all.

Whilst separate from my blog I think I should mention the Facebook group I set up-A group for people who have Treacher Collins Syndrome. It was the success and positive responses to this blog that gave me the confidence to set it up along with speaking with another person who has TCS about the groups that at that time existed on Facebook. It was on these groups that I first brought up the idea of setting up a group only for those who have it due to the large ratio of parents to people who actually have it posting. There was some definitely opposition to it, people didn't seem to like the idea of excluding parents/relatives etc. despite my reasoning that it would exist alongside those groups which do accept everybody. I decided to go ahead and in 2012 I set up the group, it now has 142 members and there have been numerous great discussions, debates and sharing of experiences. Granted it is sometimes frustrating being the admin of this group, despite having an explanation at the top of the group explaining that it is only for those who have it and providing a link to the main TCS group those who don't have it still join. This is frustrating especially when they do not say anything but don't remove themselves or they make a comment about how they know someone with TCS and ask for an exception to be made or for me to remove them from the group instead of them taking the two seconds to do it themselves. Still despite these minor frustrations I remain truly glad that I created this group and hope it continues to grow.

It's hard to believe that I've been writing this blog since 2011,  I am quite proud of it, hopefully I have raised awareness and maybe even challenged perceptions of people with TCS and similar conditions. Thank you to all those who have read my blog and will hopefully continue to do so, thank you to those who have shared it or commented on it and thanks especially to those people who encouraged me from the start. Here's to another 5000 views!

A strange year

Well due to all the graduation pictures I've seen on Facebook recently I've been reminded that its been a year since I myself graduated from university in fact its probably over a year now. Its hard to believe that so much time has passed/ Since my graduation I've volunteered in two different labs, decided that I wanted to apply for a PhD, did my first proper interview, was awarded the studentship and have been out doing fieldwork collecting samples for my PhD. Whilst I have been in the labs and out sampling, it has been very strange not having to go to lectures/classes or having do exams (though that's a very nice kind of strange). I still find it hard to believe that my degree is all over.

In terms of my fieldwork I've been to quite a few places across Northern Ireland so far and still have a lot to go. I have to collect individual leaves from trees for genetic analysis as well as recording their gps coordinates. The first two times we went out there were four of us and it was great, we got sites done on both days and I got my species collected and helped out collecting other peoples' species as well. Unfortunately the next time I went out there was only the two of us and a lot of species/samples to collect. It was three days in a row only one site each day. The first day was the worst, unfortunately it was a blazing hot day and it involved a lot of climbing up and down the side of a very steep hill through undergrowth. Of course due to the heat I didn't even think of putting a long sleeved shirt on but that meant that my arms ended up being scratched all over. It got worse when we ended up taking a wrong turn and climbed a very steep path up to the top of a hill which we then had to go back down again. Thankfully other people arrived to help out but I had to sit in the car for the final part of the day as I was so exhausted. The other two days were much better but still long and physically demanding, something I will have to get used to.

This was taken on my second day of sampling

View from the top of the very steep hill

In terms of other physical activity I went paintballing for the second time which was a lot of fun despite there only being six of us (see my previous post). My friend has also organised regular five a side football matches which are good fun and a great full body exercise. After not really playing any football during my degree after playing it most lunchtimes and in PE/games classes at my high school its been nice to play again. I recently took part in a charity football tournament along with my brother and some friends which was good fun. I do try and get out for a walk most days if I'm at home and the weather is good and I've also started going out on my bike to try and get fitter.

A picture I took on the beach near my house whilst out walking

 Its also been about a year since my last guitar lesson after I decided to take a break and to be honest whilst I know I still have a lot to learn, I haven't really missed them. I have just been enjoying messing about and having fun rather than feeling obligated to practice grade pieces or scales etc. I've attempted to teach myself some piano/keyboard but that definitely needs more work. I also had my first ever jam session with a friend and his friends which was a lot of fun. I have recorded various riffs and things but I should probably try and sit down and write a song properly.

So overall it has been a strange but good year. I've worked hard but I've also had much needed relaxation time after an intensive three year degree. I'm looking forward to the rest of the summer as well as seeing lots more of Northern Ireland collecting samples before I start my PhD properly.

Thanks for reading.