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.
Wednesday, 17 February 2016
Sunday, 7 February 2016
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!
Wednesday, 23 December 2015
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!
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!
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| Our Christmas tree with super bright lights! |
Sunday, 25 October 2015
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.
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.
Monday, 10 August 2015
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.
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.
Sunday, 5 July 2015
More superhero madness!
Now lots of stuff has happened since I last did a superhero madness...Avengers: Age of Ultron came out for one example. Marvel's latest entry in their movie universe and the sequel to one of the most successful films ever released. I've seen it twice now in the cinema and I have to say I enjoyed it both times, possibly more the second time. It is a good movie BUT its not the best Marvel movie and it could be better in a number of ways. Firstly for the good parts, the opening scene, lots of funny moments, some great new characters, great action, now for the bad in trying to be its own movie it doesn't really acknowledge the stuff that happens in the phase 2 movies/agents of SHIELD before it, possibly to many quips, it feels rushed at times and there are some strange choices made with characters which are unexpected. It also feels a bit safe, I'm not saying that they should make it super dark but Ultron wasn't quite a big a threat as I expected. So overall its a great superhero movie but could have been better, apparently the original cut was 3 hours long and given the popularity of longer movies such as the Hobbit/Lord of the rings movies you wonder why they didn't allow a longer cut to be shown in cinemas.
The Batman v Superman trailer was released a while ago. It is very much a teaser but is certainly interesting with the idea of how the world would actually react due to the presence of a super powerful alien. Ben Affleck also looks like a beast in his batsuit. Its a bit strange that despite it having finished filming a good while ago its not coming out until next year. It also feels like we know more about Suicide Squad which is currently filming and is set to come out after Batman v Superman. This hasn't been helped by all the set leaks which are rather hard to avoid reading about or seeing.
Its getting to that time of year where a lot of tv shows have finished their seasons, this includes the four comic book shows I've watched, Gothan, Arrow, The Flash and Agents of Shield (also Agent Carter but it was a mini-series). I haven't had a chance to watch Constantine yet but it has been cancelled so not sure if there is much point now. So to start off with Gotham, the Batman prequel series. It has been decent enough, fairly entertaining at times, that said if I didn't have the time it would probably be the show that I'd drop. Now Agents of Shield season 1 was a mixed bag, it had some good moments but I'm certainly glad I stuck with it for season 2. It has been a vast improvement with characters who were not very good last season improving greatly along with some great new characters. Just a shame the movie people don't seem to want to have anything to do with it, see here, According to that same article Agent Carter was created by people involved in the movies. It was decent enough but not fantastic or anything. I had high hopes for Arrow season 3 after the awesome season 2, unfortunately it ended up being rather disappointing. It definitely had some great moments but the story arc was all over the place, the characters moped a lot, and the flashbacks weren't that interesting. I also thought that some characters deserved more screen time. The main crossover episode with The Flash is a lot of fun though.
Now moving on to The Flash itself. In season 2 of Arrow a certain Barry Allen was introduced in a two part episode which then resulted in a spin-off show The Flash debuting at the same time as Arrow season 3. For those who don't know The Flash is a superhero with super speed (as well as being able to move/vibrate different parts of his body resulting in a range of cool powers). With his powers and the presence of a whole load of different metahumans it is definitely bit more out there than Arrow. It is also has a tone that is a bit more fun and light hearted, that said it does get dark at times and it actually made me cry at one point (can't remember another tv show that made me do that!). It has a great not to mention ambitious story arc and the main group of actors are enjoyable to watch (there is some great acting). Grant Gustin is great as Barry/The Flash he is confident, funny with a bit of awkwardness he is definitely human and does makes mistakes but all and all he is a hero and a guy you want to root for. One cool thing they've done is to use actors from the old Flash tv show such as John Wesley Shipp who played Barry/The Flash in the original show now playing Barry's dad as well as Mark Hamill reprising his role as The Trickster (lots of fun). As a whole The Flash isn't perfect, the romance sub-plot is awkward and a bit cringey, it is a bit cheesy at times and the cgi isn't always of the best quality. BUT in the end none of this really matters, it is such a fun, entertaining superhero show which has frequently defied expectations and I can't wait for season 2.
As for what comes next you have the debuts of Supergirl as well as Legends of Tomorrow (a spin-off from Arrow and The Flash). The supergirl pilot "leaked" online and I have watched it. I have to say I was disappointed by it. It has a lot of plot problems, the action scenes aren't that great and it beats you over the head with the fact that she is a GIRL. It is a bit annoying because instead of normalising the fact that she is a superhero who just happens to be female they make a huge deal out of it. Not to mention the irritating cliches and stereotypes in it. Maybe I'm just not the intended audience for it but when you compare it to The Flash pilot episode which is fair given that some of the same people are behind it it is inferior. The Flash pilot left me wanting more, the Supergirl pilot just left me annoyed and sceptical that it would improve enough to make me want to watch it. Legends of Tomorrow features a team up of characters from The Flash and Arrow along with some new characters. It should be good but time will tell. I don't recommend watching the trailer for it though I did because I'm impatient but given the fact that it is meant to start during the mid season break of Flash season 2 and Arrow season 4 it seems to spoil at least one of the characters story lines for one of those shows.
Thanks for reading.
The Batman v Superman trailer was released a while ago. It is very much a teaser but is certainly interesting with the idea of how the world would actually react due to the presence of a super powerful alien. Ben Affleck also looks like a beast in his batsuit. Its a bit strange that despite it having finished filming a good while ago its not coming out until next year. It also feels like we know more about Suicide Squad which is currently filming and is set to come out after Batman v Superman. This hasn't been helped by all the set leaks which are rather hard to avoid reading about or seeing.
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| Beast mode activated! |
Its getting to that time of year where a lot of tv shows have finished their seasons, this includes the four comic book shows I've watched, Gothan, Arrow, The Flash and Agents of Shield (also Agent Carter but it was a mini-series). I haven't had a chance to watch Constantine yet but it has been cancelled so not sure if there is much point now. So to start off with Gotham, the Batman prequel series. It has been decent enough, fairly entertaining at times, that said if I didn't have the time it would probably be the show that I'd drop. Now Agents of Shield season 1 was a mixed bag, it had some good moments but I'm certainly glad I stuck with it for season 2. It has been a vast improvement with characters who were not very good last season improving greatly along with some great new characters. Just a shame the movie people don't seem to want to have anything to do with it, see here, According to that same article Agent Carter was created by people involved in the movies. It was decent enough but not fantastic or anything. I had high hopes for Arrow season 3 after the awesome season 2, unfortunately it ended up being rather disappointing. It definitely had some great moments but the story arc was all over the place, the characters moped a lot, and the flashbacks weren't that interesting. I also thought that some characters deserved more screen time. The main crossover episode with The Flash is a lot of fun though.
Now moving on to The Flash itself. In season 2 of Arrow a certain Barry Allen was introduced in a two part episode which then resulted in a spin-off show The Flash debuting at the same time as Arrow season 3. For those who don't know The Flash is a superhero with super speed (as well as being able to move/vibrate different parts of his body resulting in a range of cool powers). With his powers and the presence of a whole load of different metahumans it is definitely bit more out there than Arrow. It is also has a tone that is a bit more fun and light hearted, that said it does get dark at times and it actually made me cry at one point (can't remember another tv show that made me do that!). It has a great not to mention ambitious story arc and the main group of actors are enjoyable to watch (there is some great acting). Grant Gustin is great as Barry/The Flash he is confident, funny with a bit of awkwardness he is definitely human and does makes mistakes but all and all he is a hero and a guy you want to root for. One cool thing they've done is to use actors from the old Flash tv show such as John Wesley Shipp who played Barry/The Flash in the original show now playing Barry's dad as well as Mark Hamill reprising his role as The Trickster (lots of fun). As a whole The Flash isn't perfect, the romance sub-plot is awkward and a bit cringey, it is a bit cheesy at times and the cgi isn't always of the best quality. BUT in the end none of this really matters, it is such a fun, entertaining superhero show which has frequently defied expectations and I can't wait for season 2.
As for what comes next you have the debuts of Supergirl as well as Legends of Tomorrow (a spin-off from Arrow and The Flash). The supergirl pilot "leaked" online and I have watched it. I have to say I was disappointed by it. It has a lot of plot problems, the action scenes aren't that great and it beats you over the head with the fact that she is a GIRL. It is a bit annoying because instead of normalising the fact that she is a superhero who just happens to be female they make a huge deal out of it. Not to mention the irritating cliches and stereotypes in it. Maybe I'm just not the intended audience for it but when you compare it to The Flash pilot episode which is fair given that some of the same people are behind it it is inferior. The Flash pilot left me wanting more, the Supergirl pilot just left me annoyed and sceptical that it would improve enough to make me want to watch it. Legends of Tomorrow features a team up of characters from The Flash and Arrow along with some new characters. It should be good but time will tell. I don't recommend watching the trailer for it though I did because I'm impatient but given the fact that it is meant to start during the mid season break of Flash season 2 and Arrow season 4 it seems to spoil at least one of the characters story lines for one of those shows.
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| Melissa Benoist is fine as Supergirl just a shame about all the other characters |
In praise of Worm, a web serial
I haven't been reading as much as I used to but I came across this free web serial called Worm several weeks ago and despite its hefty length (roughly 26 typical novels according to the author) I have finished it. It is set in a world where superheroes and supervillians are common but it is much less black and white than your typical superhuman story and it is definitely not suitable for kids. There is a large cast of characters but it mainly focuses on a teenage girl named Taylor. She has developed the ability to control insects and decides she wants to become a hero but after a run in with a notorious local villian she is mistaken for a villain herself setting her down an exciting but dangerous path. The author really builds up the mythology behind this world, the government sponsored heroes, the villains, a super prison for people with powers, a gang called the slaughterhouse nine, other high level threats and of course the endbringers....There are huge battles, monsters, robots, artificial intelligences, clones, parallel worlds and conspiracies. While much as I love comic books and superheroes I have't actually read or watched that many in the whole scheme of things but that said I think the author comes up with some really cool ideas regarding powers and different ways they are used. I also liked the fact that in each chapter focusing on a story arc there are also interlude chapters which focus on events happening elsewhere or the background of certain characters. All in all the best thing that I can say is that it kept me wanting more, I probably read it too quickly as I enjoyed it so much. According to his website he will hopefully edit the story, trim the fat, basically make the best version possible before publishing it in which case I will definitely buy it.
Worm-a web serial, table of contents
Worm-a web serial, table of contents
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