As an experiment, I’ve decided to stop using the crutch for a few days, and see what happens. According to the surgeon last year, the surgery I had in Minnesota last fall would leave me walking independently after 8-24 months, depending on how quickly the rehab got done. The Junior Cert, the big exams I had last June, delayed that rehab slightly, but we’re back on track now. I’m interested to see how I fare without the crutch. If nothing else, it’ll cause me to put more weight through my right leg, which is good for it.

On a slightly unimportant tangent, these few days are the first time I’ve walked without a walking aid of some description in a couple of years. Having two hands free while walking down the street is a simultaneously alien and wonderful feeling.

Finally, I got an iPad the other night, and I’ve been playing with it since then. Full post on its merits to come.

To start, I have a moderate form of Cerebral Palsy, a brain disorder affecting muscles in the body. My form is known as spastic diplegia, and affects my right arm and right leg. I can walk independently, but my balance isn’t great and there’s a pronounced limp. Also, my right leg would get fatigued very quickly. For any walking outside the house, I use either a crutch or a cane. I used to love being different and using a cane (I got a replica of House’s flame-cane) but recently I’ve reverted back to using a generic crutch, enjoying how generic it is, how ‘normal’. A cane looks weird, you could be a wannabe pimp or it could be a fashion accessory, but when you have a crutch, people just automatically assume you broke your leg or something.

I talk a lot more freely about Cerebral Palsy online (almost all of that discussion occurs here on Trust Tommy in the “CP” tag). I don’t mind talking about it in person if I know the person, but I get quite annoyed/irked if someone I’ve never met before starts asking about it. Randomers on trains and taxi-drivers seem to be the worst. Recently, I’ve taken to lying about the crutch or the limp when asked. I’ll say I broke my leg. I don’t mean to put anyone off talking to me by saying this — I don’t mind in the slightest talking about this stuff in person, just so long as we’re not only talking by pure chance. I’ve had people tell me that my openness about it here on the blog has helped them with their disability, and it’s a most humbling experience. I definitely think that’s something that motivates me not to make a big deal about it.

I never want my Cerebral Palsy to make things awkward. I hate so-called ‘positive discrimination’ and I’m blessed with a family that refuses to let it be a big deal. Growing up, my parents went to the ends of the earth to make sure my CP didn’t limit me having a normal childhood as much as they could, and I’m hugely grateful for that. I think it’s summed up by my cousin, who said to me “watch yourself on the stairs, cripple” without looking up from his book. There’s acceptance there, no denial that there’s something wrong, but at the same time not making a big deal about it. I laughed at his comment as I got off the sofa.

I think that, since that’s the environment I grew up in, it makes sense that my family’s attitudes rubbed off on me. I always love being busy, and I often wonder if it’s in spite of Cerebral Palsy, or maybe because of it. Am I always going up to Dublin, doing internships, trying new things and so on because, subconsciously, I think people don’t expect me to be able to? It’s something I often wonder, but either way, that’s the sort of person I am. I need to have something to engage myself with, to always be doing something fun and quirky. Sometimes, I overplay and get too tired and can’t do anything for a few days, but I only get about 2 of those a year.

I definitely think the spirit of open-ness is best when it comes to an illness or disability. I guess it comes back to, if you can’t laugh at yourself, how can you laugh at other people? If you can manage to remain light-hearted around the hardships in your life, you can pretty much do anything.

An area of interest in Cerebral Palsy is how doctors, parents and the patient themselves all have a different view on how the disability presents itself. A doctor is concerned about a muscle’s range of motion — that the norm is, say, 125 degrees of flexion, and the patient only manages 115 degrees.

An extra 10 degrees of flexion doesn’t make a big difference to me, the patient, when I go about my everyday life. However, when I go to put on socks and have to bend my leg up on the chair, I find that on most chairs, I can’t bend my leg back far enough. That’s a practical implication of the limited range of motion.

In the last surgery, my balance was vastly improved. I don’t really know how charts would have showed this or doctors perceived this, but I noticed that I was able to carry hot liquids between rooms and spill less than before the surgery.

When I do exercises, it’s not for improved range of motion or however else they measure improvements on charts. I do exercise and generally keep on top of CP so that I can go to Dublin without falling or getting too tired.

For the person with the disability, everyday effects matter much more than what gets recorded on charts.

I’ve had my Amazon Kindle a couple of days now and I can honestly say that the move from book to eBook is one of the best decisions I’ve ever made.

The Screen

The first that I noticed about the Kindle as I took it out of the box is just how much like a printed page it is. A lot of tech stuff comes out of the box with some cardboard on it, with a mockup of what the product looks like in use, and I honestly thought there was some paper like this on my Kindle. That just couldn’t be a screen?! As it turns out, Amazon didn’t give their baby a backlit screen that the iPad and such has. It has technology that’s known as Electronic Ink. Why? Well, one, it improves the battery life a lot. Apple’s website boasts that the iPad has up to 10 hours of surfing the web on Wi-Fi, watching video, or listening to music [1]. The Amazon Kindle has up to 30 days of battery life [2]. Electronic Ink also means that the screen looks like a printed page. I spend a lot of time each day behind a screen and I always like to give my eyes a break when I read a book. With the Kindle, that doesn’t change.

One downside, if you’d even call it that, is that when you turn the page, the Ink has to ‘refresh’ and this leads to a screen flash. It’s hard to describe if you’ve never seen it but basically, when you turn the page, the colours invert for about half a second. It doesn’t bother me in the slightest but some negative reviews of the device mention it as an annoyance.

I should mention navigating menus here too. It’s a pain. It’s slow and laggy. However, this is not your laptop and you spend most of your time reading, not going around the menus. Imagine a book being hard to open. In fact, because I don’t use the wireless (I buy the books on my laptop), my use of the menus is limited to flicking down to my current book and selecting it. Even with that, I don’t often do that, because if I’m in a book and shut the Kindle down, it starts up the next time on my page — bypassing the menu entirely.

You need light to read the Kindle screen, but since books need light too, I hardly see this as a downside.

The Physical Thing

The Kindle is wonderful to hold and use. Lighter than any paperback I’ve held recently, I can it hold above my head lying down (can you honestly say you can do that with your iPad?) or just in my hands. For long reading periods, I tend to rotate the screen and hold the device landscape, as it fits nicer. Furthermore, my Cerebral Palsy affects my left hand as well as my leg, and holding books open for long periods got sore on my hand. The Kindle is a lot smaller, so can be used with one hand or propped up by another book or whatever.

Yep, it reads to you too

A lot of the criticism of the device comes from what you can’t do on it — what? people say, no email? no photos?

I don’t say this much, but they’re actually doing it wrong — they misunderstand what they’re looking at. The Kindle is not “Amazon’s answer to the iPad” — the Kindle is the new book. Can you check your email on your first edition Romeo and Juliet? No, because when you’re reading a novel or the newspaper, you’re switched off. The downside of Apple’s iBooks is that you’re reading them on on an iPad or iPhone, and there’s a big distraction there to check Twitter or your email or play Angry Birds. The Kindle has no more functionality than your paperback and that’s how it should be.

The Store

I should say at the start that I’ve bought no books on the Kindle itself — both of the books that I’ve read (Mark Coggins’ The Immortal Games and Stephen King’s The Shining) have been bought on my laptop and then transferred via USB cable to the Kindle.

I could do it off Wifi but I like not having to navigate much on the Kindle itself. Buying on the go is the only reason you’d pay an extra $50 for the 3G Kindle (well, that and being able to wirelessly send yourself books you buy on your computer when not on Wifi) — I honestly think it’s not worth it though.

Kindle pricing varies a lot — usually from about $.99 to $12.99. I’ve never seen a Kindle book more expensive than its paperback version so I think that you can safely say that you’ll always save money buying on your Kindle, even if it’s only a dollar or two. I myself have made back about $13 of my $139 Kindle purchase thanks to the better Kindle pricing.

Overall

Your original investment of $139 is/will be made up in the savings you make buying the Kindle edition of books, but where the Kindle really shines is in the simple fact that I will read more because I have one. I spend about half my life on trains (about 80 hours in the month of August) but I never read that much on them because they’d have weighed my bag down. I can now have up to 3,500 books in something smaller than 1 paperback, which means that I will take it with me everywhere, and will read exponentially more books. That’s something that, to me, you can’t put a price on, and that even if I didn’t make back the money –that Kindle books were always $5 more than paperbacks– I’d still do it.

It makes you wonder — if you could pay for more stuff like this, eating better, going to the gym more, sleeping better, reading more books or spending more time with their family and so on, would people do it?

The Amazon Kindle is $139 dollars from Amazon. You can purchase the device and the books for it with an Irish credit card. I don’t know if their 3G version (which costs $189) works in Ireland, anyone know?

Any questions about the Kindle? Ask in the comments or email tommyATcollisonDOTie (replacing AT with @ and DOT with a period/full stop).

[1] Source: iPad tech specs page on Apple.com.

[2] Assuming you have the Wifi-only Kindle with Wifi turned off (3 weeks with it on). Wifi + 3G one: 1 months with connectivity off (10 days with it on). Source: Amazon’s Kindle Page

The thing about Cerebral Palsy (CP) is that it’s limiting. You have to watch what you do and how you do it. It’s something that you have to stay on top or it because it’s a slippery slope if you develop bad habits with the way you sit or something equally mundane. On the whole, it’s largely manageable and with the surgical intervention I’ve been lucky to have, I have a reasonably easy road to stay at the very least walking with a cane for life, which is fantastic.

But the annoying part of CP isn’t the cane or the limited sporting opportunities or not being able to do as much as peers, endurance-wise: to me, it’s the shoes.

When I was very young, I was given Piedro boots, which were orthotic shoes or boots that were designed to be good for disabled feet and easy to lace up (A lot of CP, mine included, affects hand dexterity as well as legs). They weren’t, at least in my eyes, that good looking. I cared how I looked. Not having control over what shoes I could wear pissed me off.

That changed when I went for surgery in the US in 2004 and I was given SMOs, which look like these but only ankle-high. They fit snugly into any wide shoe and I was already graced with big feet (actually a good thing in CP — better balance) so my choice in footwear had increased dramatically.

It was on an old episode of Top Gear that I first saw a pair of converse and I wore little else over the next couple of years. When I was about 15, my knee started flaring up. Because converse had very little support (even with the SMOs) we (my physio & family) thought that these shoes were to blame and replaced them with different, more supportive shoes that I disliked the look of, purely because they weren’t converse.

I thought that was the end of my wearing converse until a couple of days before I came over to Minnesota in September 2010. I had been fitted for a new pair of SMOs in July (my feet have grown a lot and I need better fitting SMOs every couple of months) and was collecting them. One of the questions I had for my surgeon was if this surgery would allow me to wear converse again — yeah, that was actually one of the things I cared most about. I reasoned that the woman who fits my orthotics would be in a good position to comment on the shoes. As I tried the new SMOs on, I asked her about the converse and she said that as long as the SMOs were on, what shoes I wore didn’t matter.

I was overjoyed to break out a pair of cons, I’m not gonna lie.

So yeah, maybe it’s weird (or girly or whatever) to be so caught up about shoes but there you go.

I’m going into hospital on Tuesday for surgery on my leg to try and minimize the effects of Cerebral Palsy on me. That’ll involve 4 nights in hospital and a further 6 weeks recuperation involving physio sessions and reclining wheelchairs. Hopefully I’ll be able to get out of the latter quickly because they’re the bane of my existence. Absolutely hate wheelchairs.

Anyhow, if you’re interested in keeping up with me in hospital, you might want to subscribe to my other blog, the originally titled http://tommycollison.posterous.com/. I set it up just for America. It’s for the times I want to update people of what’s happening around the hospital, hotel or the greater Minnesota area. There will be pictures and most probably videos, though they’re dependent on the availability of wifi. I reckon there’ll be a couple of updates a day, a couple of lines each.

The blog was originally a twitter account but I thought that it was a better idea to free myself from the constraints of 140 characters.

I understand that some of the readers here won’t be interested in such a detailed surgery diary, and that’s fine too. Trust Tommy will continue to exist in its present form for your viewing pleasure. Please keep hands and feet inside the cart at all times.

This came in the post recently: an Irish Rail disability travel-card. Once over 16 (as I became last June), one can apply for the card that entitles the user and one companion to free rail travel on all Irish Rail, Bus Éireann and LUAS journeys.

Having clocked up 20 hours on the train this week alone, I can see myself really using the service that they’re providing a lot. Let alone it now being easier to go to Dublin on Saturdays to see friends, I’m also making the transition into going to physio appointments on my own (as opposed to with my folks) which means going up via train and getting public transport and/or walking to the appointment, and the lack of costs in that area (especially when Cerebral Palsy mounts costs in other ways) is really handy.

Things that I’ve (unsuccessfully) tried to get the card to work on: taxis and the first-class carriages.

On a slightly different note, the post’s title refers to a behaviour I’ve seen on numerous occasions in my dealings and interactions with disabled people (both physical and mental). It’s linked with the above paragraph in that (some) people seem willing and in some cases almost eager to blame their disability for their own short-comings. Disability is, in my opinion, one of the most-used scapegoats in history.

There’s no denying that it does have an effect on people’s lives. On occasion, I’m late for Class X because I have Class Y directly before it and the two classrooms are at opposite ends of the school – that’s something that’s undeniably the Cerebral Palsy’s fault. I find though, moreso in mental disabilities (due to their more ‘hidden’ or not-as-obvious nature), that people will unjustly attribute their problems to their disability.

The cast is off. Admittedly I should be wearing it for another two days but for a couple of reasons, I’m not.

A few weeks ago, we spotted specks of blood on the cast. We hastily removed the cast with a scissors and fixed the problem (cast was rubbing the skin off my kneecap so we removed the offending bit of the plaster). Since then, we’ve been wearing it normally, secured with a length of gauze but taking it off to shower and go to RENT rehearsals.

The decision to take off the cast early won’t damage anything – the surgeon who did the original cortisone injections said that ‘it doesn’t need to be exactly six weeks; five-and-a-half weeks wouldn’t harm it’.

Certainly, the cortisone and the cast have done their duty. I’ve been completely pain free for about 3 weeks now; for the first time in roughly 5 months. It’s a phenomenal feeling but it borders on creepy – something that’s been such a big part of your life is gone just like that… I’ve been sleeping normally, less tired and even been off my cocktail of painkillers (my liver will thank me in 70+ years), all of which are fantastic things.

The leg though is quite stiff. While climbing stairs, I’ll get halfway up and my leg will begin to get weak and once or twice it’s even given out from underneath me. Going down is easier except for when I put my weight on the bended knee, at which time I get a really bad spasm of pain. More general things include having to use my hand to physically lift it onto a chair or my bed instead of it being able to do so itself.

RENT has been wonderful in giving me a concrete goal to work towards from the perspective of recovery. There’s a big weekend pencilled out next month – the deadline that I have to be in peak physical fitness. The fact that the character of Mark is one of the leads which means lots of moving around onstage that I need to be able for. The fact that it’s RENT means that jumping on tables will be required at more than one point and I want my knee to limit me in the least amount possible.

So all in all, Tommy’s a happy bunny – looking forward to going swimming tomorrow, I think! :)

Tomorrow’s the last day of me being in a wheelchair for school. The cast comes off on April 1st and I break for Easter holidays so it’s all good!

Seriously looking forward to these holidays. Despite the slightly worrying knowledge that there’s only about 8 weeks to summer, I really am looking forward to these holidays. I need them!

I can’t wait to be out of the wheelchair though. I mean, sure, on the one hand it’s not that big a deal if it means the cortisone works and I’m pain free, but it’s certainly not an experience I’m willing to repeat any time soon. It’s a rather large pain to be stuck in, but tomorrow I’m free!

Photo owned by popejon2 (cc)