Changing of the seasons

Once again I must apologise for the lack of posts, things have been busy and its been a struggle coming up with interesting topics. For now just to give you a bit of an update I've been busy with my PhD (as always!). Managed to get the work on one of the species I'm working on completed and written up so we are waiting to hear back from the independent reviewers to see if there are any changes that need to be made before it is published. I've moved onto the next of my species and I have to say it is good to be back doing lab work again and feeling productive, that said since I'm only really doing lab work at the minute its rather tiring. Days when I'm doing DNA extractions along with other things are rather long and involve a fair amount of time standing but I guess it will be good for my health in the long run!. This week I had to do a presentation along with other second year PhD students from my research cluster at the university. This lasted 15 minutes along with 5 minutes for questioning. As I've mentioned before on this blog presentations make me nervous, I'm much better than I was when I was younger but still get anxious. One of the reasons that I get nervous is that I'm not sure whether or not people will understand me. This was made worse whenever I recorded myself and what I heard was a lot different to what I hear when I speak. That said there isn't really anything I can do about it other than practice and make sure I speak at a normal pace and as clearly as possible. One of my supervisors had me give the presentation in front of him to practice and he was able to give me some tips. Whatever way the presentations were organised I ended up having to go first...at 9am. Thankfully people did show up and I thought it went pretty well although I may have rushed it slightly.

In other news I've started drum lessons! As much as I love guitar I have always wanted to have a go at the drums and now that I have a bit more time on my hands and now that I can drive myself about it seemed like a good time to start. I've had four lessons so far and I have to admit its been quite challenging. You have to think about what both hands are doing as well as what your feet are doing and it may be that your left hand is playing double beats but your right foot is meant to be playing single beats. Often times it seems like you need to repeat certain things over and over before they finally click and then you wonder why it was so difficult in the first place. The definite highlight so far was when my teacher taught me a simple version of the drums for Muse's Time is Running Out and I played along with the actual song.

Speaking of Muse I was able to go see them live on the 6th March in Belfast which was awesome, you can actually read a review of it here:
Muse Wednesday 6th April 2016 – SSE Arena, Belfast

*The title of this update is a Two Door Cinema Club who I was lucky enough to get to see this week. They put on a fantastic show and I'm looking forward to their new material. You can find my brother's review on the website here

Ironically despite the lack of updates to my own blog I've been in a bit of a writing mood lately, I also wrote an article for  my university newspaper about my love of The Flash tv show:
The Flash-setting-the-standard-for-superhero-storytelling

I also keep forgetting to share the articles that I've written for the university blog, so here they are:
Biodiversity offsetting-a fool's errand
Wonderful Woodland Walks
Perseverance for Preservation

Hope this goes to some way make up for the lack of updates, I'll leave you with some pictures (taken on my not so great phone camera) from the Muse concert. Thanks for reading!

The stage was set in the middle of the arena with two walkways either side

These are the drones, large inflatable ball things which floated around the arena

The opening band Nothing but Thieves were pretty good

Projection of the drummer on one of the screens which hung down

Ch-ch-ch-ch-changes

Well it has been a bit of a strange time for me recently in terms of my PhD. My primary supervisor has left to move to another university. Another person who worked in the lab and who I had gotten a lot of help/advice from is also leaving. The person who I'm most friendly with in the PhD office is finishing her thesis and will also be leaving soon. With all the changes happening in the lab I, along with the three PhD students from the neighbouring lab have had to move into the workspace/office within the lab that I work in. On the one hand this is good because it means I don't have to go in between the lab and the PhD office and it means that it shouldn't be as noisy on the other hand I was settled in the PhD office and this news basically came out of nowhere and was rather vague in the actual details. Thankfully I was able to have talk with the person who is leaving and they have clarified what exactly is all happening so I feel a bit better about it now. All of this hasn't happened at the best time as I'm currently in the analysis/write-up stage of this section of my PhD so I actually need help at the minute having not done any of the analyses before. That said I'm hoping things will settle down soon and once I get this part of my PhD finished I will be able to get back into the lab and start feeling more productive again.

The first time I heard this song was in Shrek 2, the Life on Mars tv show introduced me to the song of the same name, not sure if I had heard Starman before but I loved it in The Martian.

An attempt was made

Well as I write this I feel a combination of feelings, anger, confusion and bemusement. I like to think I'm a relatively intelligent guy but I discovered today that I had wasted a lot of time and effort trying to help someone who I thought had TCS but who it turned out was lying. I won't go into details I still haven't quite got my head around the whole situation. It is very frustrating when you try to do something nice only for it to turn out to have been a complete waste of time.

That said I won't let it discourage me from helping people in the future but obviously I will be a bit more cynical the next time somebody gets in contact with me especially via Facebook...

I have a email address specifically for my blog, feel free to contact me with any questions, queries or comments:
jab_tcsblog@hotmail.co.uk

I also run a facebook group JUST for people who have Treacher Collins Syndrome so if you have TCS feel free to join it:
https://www.facebook.com/groups/168099453326386/

If you do not have TCS you can join one of the other many groups on Facebook, I've listed the main ones below:
https://www.facebook.com/groups/TreacherCollinsSyndrome/?ref=browser
https://www.facebook.com/groups/TCSUK/?ref=browser
https://www.facebook.com/groups/2419901287/?ref=browser


Hope this helps somebody, thanks for reading.

Drive!

Well it's official, I've passed my driving test and I'm now allowed to drive by myself. I'm really pleased to have done it after being nervous about learning in the first place. I'm also really pleased that I managed to do it first time and with only four minors (these are mistakes, you are allowed 15 I think)! For those not aware of the rules in the UK once you passed your test you have to put R plates on your car and you cannot go above 45mph for a year after you have passed your test. I won't be buying a car for myself any time soon as I wouldn't use it enough to justify it so for the meantime I will be sharing with my mum. The weird thing is now I have a bit more free time to myself now that I'm finished my lessons, maybe I'll update this blog a bit more often!

So this is Christmas?

Once again I must apologise for a lack of updates, I'm starting to realise why when I first started this blog why so many other TCS blogs/sites hadn't been updated in a while. It is hard to write even once a month especially when I don't want it to be a series of negative pieces about  dealing with TCS. In fairness I have been busy with my PhD along with driving lessons. After my summer holiday it was straight back into work and I had a busy period where I was out most weekends getting samples mainly with my dad. It was great getting out all over Northern Ireland and I saw some lovely places. That said it was a relief to eventually finish sampling for the year after managing to collect the majority of the samples I needed. Since then I have been working away in the lab and am close to finishing off one section of my project but I still have a lot of work ahead of me. In other news I passed my theory driving test which was a relief. I'm still taking driving lessons and hope to get my actual licence sometime early 2016.

You can see some of the many other  pictures I took whilst sampling at my flickr page


Once again Christmas seems to have snuck up on me it's hard to believe that tomorrow is Christmas Eve. I don't really feel that Christmassey yet but I guess that's one of the downsides of being an adult. Thankfully I no longer have exams in January so at least I don't feel under pressure to revise over the holiday. I don't really have any New Years resolutions but I will try and write more for this blog, I do have ideas of things to write about it's just a case of sitting down and actually writing or rather typing stuff.

Thanks for being patient and Merry Christmas/Happy Holidays and have a good New Year!

Our Christmas tree with super bright lights!

Wonder-my thoughts

Well I finally got around to buying this book, I had written a preview of it a good while ago which I got a fair amount of criticism due tot he fact that I hadn't read it yet. But now I have and I can give my full opinion of it. I have to say that many of my concerns in my preview turn out to be true. The author has said herself that the main character August has Treacher Collins Syndrome complicated by another mysterious medical condition. Despite this she proceeds to ignore or get wrong many aspects of living with TCS is actually like. For one thing everyone seems to be able to understand him perfectly. Also for some very strange reason August hasn't needed a hearing aid from birth but his hearing has somehow got worse over time. He also apparently hears a lot of white noise but then whenever he gets the hearing aid that cures him of it, its all a bit strange. He also gets used to the hearing aid extremely quickly it seems. It took me quite a while to get used to changing from analog to digital hearing aids so I can't imagine how long it would take me to get used to wearing a hearing aid after having not worn one. She mentions his difficulty eating without making a mess but nothing about how long it takes nor anything about him needing a feeding tube when he was young/him having a scar from one. It would be nice if the author had actually called his condition Treacher Collins Syndrome instead she calls it by a far less common name which is a shame because she could have raised so much more awareness of it.

The problem is that the whole message of the book is being kind and revolves around the way people react to how August looks. Its hard not to think that the author might have been better of using a condition that purely affects how a person looks rather than a condition such as TCS which has affects so much more to spread this message. I'm still struggling to get my head around the fact that the author wrote the book after only doing internet research. As someone who actually has the condition it is frustrating that many people's knowledge of it will stem from this book which isn't accurate.

I know I am maybe being too harsh on it but I think someone has to take a step back and say hold on a minute this book isn't quite as good as everyone is making it out to be. Its crazy how popular it has gotten with schools and other organisations jumping all over it. I understand the message is of being kind is a good one to teach kids but I don't think you need a specific book to do that. I recently read that the book is going to be turned into a movie which I think will be very interesting to see for a number of reasons. Firstly how are they going to portray August? Are they going to have child with a facial disfigurement? Are they going to have a "normal" child and use cgi/makeup to make them look like they have a disfigurement? Or will they go down another route for example not showing his face at all. It will be also be interesting given how the book switches from one characters perspective to another each chapter and how much of the book is the thoughts of the characters.

This was quite a difficult post to write, its rather hard to review a book like this in an unbiased way or from the point of view of the general public. That said it will probably be lost in the sea of positive reviews and that's fine but I felt like I as someone who actually has TCS should give my thoughts on it.

Thanks for reading.

Post holiday blues

Once again I must apologise for not writing anything (well anything not related to superheroes) but this time I have a good excuse. I'm not long back from my summer holiday, two weeks where I had a valid excuse not to write. I went with my mum, my dad and my brother to New York for a few days and then down to Florida where we rented a house. I have been to New York a few times but I always forget just how BIG and busy it is. We had done most of the main attractions such as the empire state building before but we certainly kept ourselves busy. We saw the Penn and Teller magic show on broadway the first night which was amazing, I definitely recommend it. On the second day we did the high line walk, we visited Chelsea market and we saw the One World Trade centre, unfortunately due to work being done on the subway we had to walk a lot further than we would've liked at the end of the day after already having walked a lot! On the third day we went to see New York City FC vs Toronto FC. Major League Soccer is definitely growing in popularity that said the quality of the play was a bit lacking to say the least. It certainly made for an entertaining watch though with 4 penalties being given and it ending 4-4! On the final day we went to the Natural History Museum, walked through a bit of central park and then had a look around the shops. It was a packed four days with a lot of walking so by the end of it we were ready for a bit of relaxation.

The rest of the holiday was spent in a house we had rented in Florida. It was a lovely big house with a big yard with a deck area and pool it also overlooked a lake.It was great especially due to all the wildlife, big birds including a heron which visited us on a number of occasions as well as turtles which swam to the edge of the lake looking for food (we fed them left over vegetables). It was a bit disappointing as it rained the first two days but the house was big enough that we were able to spread out and it also had its own pool table which was a bonus. It was lovely to just be able to relax that said we also went shopping (I spent a lot of money due to the great exchange rate) and we also went to a state park where we took an air boat ride and saw alligators. While it was nice to be able to sit out beside our private pool it was even nicer to go to the nearby beach. Lovely cool white sand, warm sea water and a nice breeze.

Its certainly been a bit depressing coming back home to weather that is for the most part not very summery. There is also the fact that this is my first year where I've had a full time job so I was straight back to work unlike all my previous summers where I've had lots of time off. Currently I've got my phd work including getting samples as well as learning to drive along with learning driving theory so I'm rather busy.

Here's some pictures from my holiday:

Thanks for reading, hopefully I'll have more updates soon.