Raising an amputee – my experience growing up as a child without a leg

Back in February, one of the guys I train with mentioned that he saw a topic in one of the forums he frequents that was started by someone who had one of his legs amputated recently, and was seeing if anyone else out there was suffering from the same condition. I jumped in and made a few posts, but one of the guys on there jumped into the conversation as his daughter had her leg amputated below the knee a while ago and was curious how she’d fare when she got to school age and how other kids might react to her condition.

As someone who has had their leg amputated as a child (see the bio, as well as my posts on growing up as an amputee and my medical history), I figured I might be able to offer some advice on what to expect and I sent him a lengthy response over e-mail. I was thinking about this the other day, and thought it probably wouldn’t be such a bad idea to post an amended version up here.

In prep for writing my original response, I actually had a chat to Wifey since she’s my voice of reason, because I wanted to give an honest response on growing up as an amputee, but didn’t want to be melodramatic or anything. Hopefully, this will be a measured response :)

I think it’s worth prefacing that other amputees’ circumstances may be different to mine – even when looking at gender, there are differences in how girls and boys react to things by nature of the social norms obliged by gender/society, so keep in mind I’m a guy and grew up in that environment. There’s also the extent of the amputation – amputation at the ankle, below the knee or above the knee – my above-knee prosthesis slipped on my stump and then the prosthesis attached to my body with a big metal and leather waist band. Gotta love technology in the 80s, hopefully suction technology’s become the norm for kids these days, and things are better. There’s no comparison to the options available as a kid and the leg I have now, so keep that in mind too!

Anywho, about me growing up – got paid out and rubbished heaps because of my leg, both from kids in my class/year level, and from all the big kids as well at school. It’s hard and makes you angry as a kid (and frustrating as a parent watching on) – I had all sorts of aggression issues when I was a kid, and thinking back I’d say it was a combination of my cheeky personality (I blame it on being a middle child and a ranga!) and my issues with my leg and the baggage that comes with that. I wasn’t able to verbalise my issues and work through all those emotions because of how young I was, and it’s only been as I’ve gotten older that I can trace back to when I started to accept and work through my feelings and that this coincided with when I started getting in less trouble at school… so from the age of about 6 – 11 I was a bit of a handful (understatement), but I mellowed out from then onwards, and continue to be pretty chilled out these days.

It wasn’t all negative though – I always had a good group of friends who would stick up for me and didn’t care about the leg. In fact, over the years it came in handy and we’d take the piss about it, so it’s all good :) Like when McAdam and I were a bit inebriated at a party and at one point in the evening my leg ended up on the clothesline and didn’t come down for the rest of the night :D Kids can be cruel, and if you stand out, it means you’re likely to get on the receiving end of stuff. A good group of friends will always make a world of difference though.

On the other side, having to plough through life on one leg and coming out of it well makes you stronger for the experience – I used to physically fall over all the time when I was a kid because of the leg, and what Mum and Dad had to do (and it broke their heart) was to learn to not fuss over it and let me get myself up and going again, and resist the urge to pick me up each time. One time they even got a mouthful from a mother who came and helped me up when I’d fallen over at a park and thought they were ignoring me! I became a very independent kid and remain a very independent adult, almost to a fault at times. But hey, life experience – that’s what it’s all about. I wouldn’t be as strong-willed today if it weren’t for their emphasis growing up that I had to learn to look after myself.

If you have a child who has had an amputation, the best thing you can do (if my memory holds up :P ) is to just reinforce how much you love them, and prepare them by not whitewashing about stuff when they get a hard time from kids at school. Teach them to be strong-willed and independent, and keep up with all the extra-curricular stuff they might be interested in doing, like swimming (great life skill anyways, but for an amputee it helps bridge the gap and keep up with the rest of the kids if you’re a good swimmer!), dancing/martial arts (great for gait, fitness, weight [weight is extremely important as an amputee, as fluctuations affect how the socket fits the stump] and tempering the stump), basketball, etc. As a kid I was always doing something – swimming was awesome as loved being able to beat everyone in class once we got in the pool because nobody expected it (!), and I used to play hockey, basketball, footy (though I was a bit crap at footy, but still ran around anyways!), Taekwondo (to be honest this actually helped control some of my aggression and taught me to channel it in much more productive ways), tennis, even all the track stuff like hurdles and other athletics. Again, I was a bit rubbish at them, but I enjoyed giving them a go and was always active as a kid. Despite being a chubby ranga!

Things changed a lot in high school as the divide between the sporty kids and the not-so sporty kids inadvertently put you into cliques (there was no way I could keep up with everyone in high school so I stopped being active and focused more on studying instead, though looking back I wished I started doing karate when I was a teenager!)… though again, this might also be just what happens with guys, and given the quality of the prosthetics now, your child’s mileage may vary. With girls, since there can be some pretty full-on psychological bullying and bitchiness in high school, I’m not sure how that would come into it (and my solution for tormenting and bullying from another boy was hardly eloquent – I’d start a fight and try and kick them with my fake leg :P ). As long as your child is strong-willed and has a solid emotional foundation, that’s probably all your can do.

The good news is that once school’s done, society’s a different beast and I’ve never been discriminated against in the workplace, and I’ve been consistently employed since I started with part-time work after school when I was 15. There may be a few things that might be out of her league (i.e. stuff that’s particularly physically demanding on their legs, but again, mileage will vary because of the child’s stump), but over time they will learn her limits and roll with it, just as I have.

There’s definitely plenty of other anecdotes I can talk about on the blog with regards to growing up as an amputee and some of the things you have to deal with, but I figure this is getting pretty lengthy already, so it’s probably best to leave it be. I’ll add more experiences ad-hoc, and remember that they’ll all be categorised under the “History” category for easy access in the future.

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Archive: Taekwondo, 1991-style

Source: Gisoku no Jutsu
Original post date: 30 May, 2007

I can’t remember if I’ve talked about it much before, but my first formal introduction to martial arts training came when I was in Year 4, when I was about… 8 I think. Either that or it was Year 5 and I was 9. Regardless, I was in primary school, and I was still in the throes of “Angry Sean-o”. Most people I talk to now can’t believe that I was a little punk when I was a kid. From the age of about 5 or 6 until about 11, I was a great big pain in the arse. I used to answer back to the teachers, would regularly have to see the principal, would get constantly grounded, used to pick angry fights with my older brother Miguel, I started up a ‘fight club’ at school when I was 9 (not that (a) Fight Club was anywhere near to being created in all its uberness, or (b) a primary schoolyard organised scrap constitutes a ‘fight club’ :P ) and was generally an arsehole.

Anywho, I had this passion for martial arts, and my Dad thought that it would be a good idea to take himself, Miguel and I to Taekwondo classes by the time we returned from a few years in Darwin and I was hopefully old enough to tell the difference when to use the martial art, and when not to. To be honest I wasn’t sure what the outcome was – I was still a pain during the time I did Taekwondo (which was for maybe a year, possibly more?), but to my credit I don’t think I actually used it to randomly injure too many kids… I know I would have used it on Miguel because we used to fight pretty full-on as kids, but outside of that… I don’t know. I remember picking a fight in class when the teacher was out getting something… I’m not sure why, I was probably bragging about the fact I did Taekwondo knowing me :P This  proved to possibly be a good thing however…

You see, the kid I picked a fight with used his hands, and I learnt the hard way that in order to kick at someone, you need some room… and being wedged between classroom desks and chairs is hardly fertile ground for delivering a clumsy kick at someone. So, in short, I lost the scrap, and probably looked pretty goofy as well ;) I’ve never forgotten the lesson though – be wary of your surroundings.

But back to Taekwondo. I only managed to scrape to my yellow belt, which in my mind’s eye took forever. I daresay the reason I stopped going was because I had a habit in those days of being pretty fickle with stuff – I did swimming for a few years and was getting really good, then got bored of it and stopped. Did Taekwondo for a while, then stopped. Got really into basketball (basketball was very in circa 1992-1994, as were parachute pants and Megadrive; things change :P ) for a few years, then stopped when I got to high school. In fact, I pretty much stopped everything when I got to high school – changed my focus to studying and by then I’d gotten out all of the angriness… or learnt to suppress it ;) That, also, is the subject of another blog.

So, how did I go with TKD? Not too sure to be honest. I mean, I see the kids at karate, and while you have to admire their effort, they’re not exactly excuding perfect form. I’d be kinda weirded out if they did; in that sense, watching little kids do martial arts isn’t entirely unlike watching junior, like primary school soccer or footy – the kids get out there, and kick the ball somewhere and run after it. It’s very cute, but we’re talking elite sportsmen for the most part. Sure, it probably solidifies concepts or foundations for later on, but I’m getting distracted again… :P

Anyway, I remember doing all the moves and stuff, the kicks, punches and so forth. It was actually a good thing I reckon in the long run, even if I only did it for a short period of time. I felt it made starting karate a little easier since I remembered some of the basics – chamber your punch, long stances, first kata, raise your knee for your kicks – and the lesson format was kinda familiar, too. And all training halls with the wooden floors and kinda aged stone walls (aka your average community gym/hall) have that same smell/feeling when you go inside.

It’s so long ago that I can’t remember in much detail how I coped with learning different things, how I overcame stuff, how my technique evolved… if it did at all ;) But I knew from experience that when it came time to learn a martial art that I couldn’t do Taekwondo – too much focus on leg work and not enough on upper body techniques. I know this is a generalisation (and conversley, TKD practitioners criticise karate for the quality of their kicks; in fact, most martial arts have participants who have a habit of criticising different styles or different arts altogether [again, food for thought and the subject of further blogs!]), but I believe that I’ve made the right choice in choosing to go down the path of karate.

I waffle on too much :P Quick summary – I did Taekwondo as a kid, it was fun, but I was fickle and gave it up :P My Dad and brother kept going a little longer and got to their green belt (it went white >> yellow >> green), but they stopped after Miguel got hit by a car and broke his leg, which is pretty understandable.

Well, next time I report I daresay will be a post-training round-up. Oh, and for those interested I’ve added a few more photos and stuff to my pics; nothing training-related, just random stuff :) Enjoy!

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Archive: Robot leg, anime, food

Source: Gisoku no Jutsu
Original post date: 14 May, 2007

Three parts, all equally awesome – that is today’s blog stuffu.

Okay, robot leg time. I remember one time in my job previous to my current one that one day a wee tacker asked me why I walked funny. Kids are awesome, aren’t they? So I said to him that I had a metal leg. He thought the prospect of having a metal leg was supremely uber, as did his younger brother. So, with a nod to their Mum, I showed them what the artificial leg (well, the knee and below) looked like – first they saw the knee (“Wow!”), then I did my favourite trick and pulled off the foam shroud that helps keep the leg’s shape when I wear trousers/jeans/whatever, displaying the awesome might of the silvery-shiny metallic pole that connects the knee unit to the foot. This somehow surpassed the uber-factor of the knee, and they stared agape at this crazy creation. From that day onward, I became the ‘Metal Librarian’, or for the younger one who had trouble spitting out ‘Librarian’, simply ‘Metal Man’. This was/is/will continue to be a cool diatribe in the daily life of Sean.

Anywho, fast forward to last week (or should it be rewind? I confuse myself sometimes :P ), and there were a couple of new kids at karate, and a new boy I hadn’t seen before. Anywho, the kids who come to karate are very talkative once they work out the loud man with the orange goatee isn’t scary, and one of them said my foot looked funny. And then another piped up with a question about my leg. So, being me, I thought it was leg time, and showed them the knee unit, the titanium pole and how it worked. I am pleased to announce that my leg has evolved now to the ‘Robot Leg’. One of them thought it was such an awesome thing that he thought having a robot leg was cool. And then he said it was like Astro boy’s leg. I agreed that Astro Boy is awesome, and my leg would be even more awesome if it had a rocket on the end of it so I could fly around like Astro Boy. He agreed, but pointed out that I’d burn my other foot off if that happened, but this wouldn’t be so bad because I could then have two robot, Astro Boy style feet. I repeat, this kid is a champion. Thumbs up all around – having one leg is cool in the eyes of kids. Pity it wasn’t like that when I was at school :P

Part two – anime. I’ve started watching the sleeper series ‘Somedays Dreamers’ – I picked it up when Madman had their server-crashing ultra 10-year anniversary sale last year; I felt like something a bit chilled out after indulging in the first 30-something episodes of ultra-80s-classic cartoon Thundercats, so I picked Somedays Dreamers. Now, I”m only three episodes in (and I had a break over the last couple of days to watch the final episode of the retro gaming awesome that is Retrocore), but one of the characters in the series has one leg! How cool is that? I’ve seen a lot of anime over the years, from the retail and fansub VHS to DVD (and when I get a player + telly to match, Blu-Ray), but I can’t recall any contemporary anime series’ (even alternative-universe ones like Somedays Dreamers) where someone has one leg. Very cool. The only bugger is that I think the character’s just a one-off and won’t come back; that’s the feeling I’m getting anyway. I’ll wait and see what happens, but yeah, it was really cool. Might have to post a screen cap of it :)

Oh yeah, I ate heaps over the weekend – massive lunch on Saturday with Wifey’s family, then yesterday we prepared a big lunch for my Mum, Tank and Meru, and then had the in-laws over for dinner for a massive roast lamb and sticky-date pudding for dessert. Yum. Was a good way to end too much eating – I’ve put on a couple of kilos over the last two months, and I’m keen to shave them off and slim back down to get my ‘karate body’, as I call it, back. Yes, I’m vain, but at least I’m not in denial :P

Anywho, I’m not sure if I’ll get around to another post until the post-training round-up on Thursday or Friday. Looking forward to karate on Wednesday, and I’ll be getting back into weight training on Thursday. I’ll continue working on my stretches during the week, too.

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Archive: My story – the amputation

Source: Gisoku no Jutsu
Original post date: 5 March, 2007

Well, looks like I didn’t get around to putting up that extra blog post last week :P Apologies for that, the weekend turned out to be pretty busy, and I didn’t get around to doing some training on the boxing bag either :P I’ll definitely have to get around to doing some leg stretches the next few days though – my form will be particularly crap on Wednesday if I don’t.

So, today I thought I’d get started on telling how I lost my leg. Hopefully it’ll prove interesting, and I’m not sure if this will take a single post, or a couple to get through, so we’ll just see how we go. Unlike a number of amputees, I lost my leg when I was still a baby – I was about 3 months old when they chopped it off, actually. Telling how this happened is a little tricky, as I was obviously too young to remember, so I’ll be reconstructing this using the collective memory of what my parents have told me since then.

My Mum noticed that after birth, my left leg seemed a little swollen compared to my right, and brought it to the paediatrician’s attention, who didn’t seem too concerned with it. A few weeks later (maybe a month?) the swelling hadn’t gone down, and Mum always tells how she noticed things were getting really bad when she felt behind the knee cap and noticed I was bleeding out the back of it (as opposed to sweating, for example). Given this wasn’t exactly the ideal condition you want your child in, she took me to hospital to get it checked out.

I had a “strawberry birthmark” on my leg as a baby, also known as a ‘hemangioma’. These things seem to be relatively harmless in most cases from the stuff I’ve read, excepting the cases where they’re near, say, and eye or another organ. I’ll admit ignorance here, so I hopefully haven’t offended anyone with that broad generalisation, ’cause I have heard where they have caused some serious problems. Anyway, this is where my understanding gets fuzzy of things – it was a particular hemangioma that caused the problems with my leg. The resulting swelling saw my left leg balloon to this crazy degree – my folks have some pictures of me when I was in hospital as a kid, and my left leg looks at least 30 – 60% larger than my right leg, is all swelled up and is bright pink and purple from the bruising. Crazy stuff.

I’ve been told that the swelling got so intense that it literally crushed the bone, which in turn caused the leg to turn gangrenous. Compounding this, an air bubble formed in the blood in my lower leg, which has the capacity to shut down the heart if given the opportunity to travel through the bloodstream. So, in short, the leg was in a very bad state, and I was accordingly in a very bad state, teetering on that ethereal threshold between life and death (not that I would have used those words as a 3-month-old baby, but oh well – I’m an Arts student, I’m trained to use flamboyant language!). It was really serious stuff, and my parents went through a helluva lot during that period.

In total, I think I was in the hospital for a couple of months I think… like I said, over the years my encapsulation of the thing has thrown it out of whack in my head. This of course poses the question – if I was in hospital for so long, why did things get so bad? Well, it certainly didn’t help that we had an arrogant sonnovabitch as the doctor in charge of me. Given he’s apparently quite a prominent physician in the grand scheme of things, let’s refer to him as Doctor Evil, ’cause I don’t want the lawyers after me. I was thinking of other silly names, such as Doctor Doom, Doctor Dingbat, Doctor Putz and Doctor Headuphisarse, but I’ll stick with Doctor Evil for now. Anywho, Doctor Evil, given his prominence and standing in the medical community, assured my folks of being the one to take care of the situation, save the day, and so on, and then proceeded to do nothing. When it got to the point where I was so sick I was nearing death, he finally decided to do something about it. Yay, go him :P

So anyways, apparently my Dad finally got him to agree to amputate the leg in order to save my life, but instead of organising something urgently (this was late in the week, maybe a Friday?), he wanted to fly someone over from Melbourne to take care of it the week after. This wasn’t all that practical, given the state I was in. After more ‘discussions’, he finally conceded and a local doctor, whom we shall refer to as Doctor Tenshi (or maybe that should be Tenshi-sensei, if we’re going for the Japanese thing), came in and saved my life. Literally, it was his work on me in the operating theatre that saved my life. He’s awesome, uber, golden, all that – the name’s quite fitting: Tenshi is the Japanese word for spirits that are kinda like angels in the English language – Wikipedia gives a nice definition here. I was all of three months old when this happened.

In the aftermath, I’m told a number of things took place. Doctor Evil apparently was reluctant to supply the photos of the ‘before’ shots to my Mum of the state of my leg, who wanted them so I could see what my legs looked like when I was a baby and understand the situation I was in when I was older (apparently there was fear of a lawsuit in there, hence why there were issues with getting them). I’ve had… 11 or 12 operations on the leg since the initial operations over the years – skin grafts, clean-up jobs, I’ve had the growth plate removed, and the last two operations were in 1994 and 2001, both of which were due to a bone spur protruding from the end of my stump on the left side thereof (both happened at the same ’site’ on the bone). Given the base of the stump has to deal with the weight/impact of walking, these were somewhat inconvenient – the first case was annoying in that I’d only been in hospital three months earlier to have my appendix out, and the latter caused issues as I had the operation a few weeks into the first semester of Uni that year. This meant I had to reduce my study load to a single subject, couldn’t work for over three months, and couldn’t walk for almost the same period of time. Oh yeah, and it was bloody painful :P I mean, you wouldn’t think chopping off a small chunk of bone would hurt that much, but by slicing open all the muscles at the end of the stump, working on the bone, and then tying it all back up again… damn, it hurt.

And that pretty much sums up my amputation. I was three months old, so the lucky bit is that I only had to learn how to walk once, and can’t remember any of the painful stuff. I’m generally not phased with having to go to the hospital for any reason because I used to be in there so much when I was growing up, and I’m grateful to all the medical staff who looked after me as a kid, and for the great people who have built my legs for so many years. I might have to see if I can get this site passed along to one of the guys who looked after my artificial legs since I was a kid – I reckon he’d be stoked to see how things have come along, considering he’s known me since I was so young.

I’ll post something else up during the week, probably before Wednesday in prep for training, followed by a general post-training blog on Thursday or Friday if I can squeeze it in before the end of the week :) So yeah, I hope you enjoyed the story!!

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Archive: Update and a recap

Source: Gisoku no Jutsu/MySpace
Original post date: 16 January, 2007

Well, it’s now Tuesday and despite the fact that I forgot to throw on the knee brace this morning, all is going well. I’ve had the anti-inflammatory for the last few nights, and I’ve been icing up my knee as well. I think it’s working really well – my knee feels like its swinging through a lot better now. I’m not sure how many people talk about knees swinging through, but yeah, it’s definitely an improvement! I reckon I might ice my knee up post-training for a few weeks to make sure it stays well (thanks for the suggestion Wifey!), and hopefully this week I’ll start some exercises between classes to strengthen up my leg to help cope with the training.

Okay, so I said a while back that I’d throw in tidbits from my training, and I figured that now might be a good time to start… especially seeing as it’s 40 degrees outside at the moment, and knowing my luck, not enough people will rock up tomorrow night for training again :P Anywho, back to the point – I figured today I’d talk about the reason I had my 12-month break from karate from November ‘05 – November ‘06.

First up, I’ll give a little background to the situation. In early 2005 I was given the privalege of an invitation to join the instructors and assistants at the weekly senior training sessions. These would be on a Sunday night and go for a good 1.5 – 2 hours, and the only way you were able to attend was purely by invitation – students from lower grades were generally invited if their instructors thought they had potential or showed a great level of commitment in order to prepare them for assisting during class, and eventually being able to instruct classes themselves. The commitment and potential of ur little group (Jyastin-kun, Tank, Buu-Adam and myself) were looked upon favourably, so we were extended an invitation. I was chuffed, given I only had one leg and could still do this crazy training.

Anywho, senior training was/is awesome – it’s incredibly full on and the standard is really high, and it definitely pushed me, which is a good thing. In the leap up to my grading at the end of October ‘05, I pushed myself a bit too hard, and post-grading, a started having troubles with my leg. The maleable plastic sheath inside my prosthesis started to tear, and as a result started damaging the skin on my stump. I’d also destroyed another knee unit over the course of 12-18 months, and when a new one was installed, I misjudged the correct height and waited too long to get the height adjusted properly. The incorrect height, coupled with the tear in the plastic sheath, started to cause my skin to tear.

I had the height fixed in January, but by then I was already having massive issues with my leg. I was wrapping gauze padding over certain spots of my stump and taping it down with adhesive bandages; over the course of the month, the repeated stress the adhesive caused to my stump resulted in infrequent skin break down on my stump. I was working with the guys who take care of my prosthesis (they’re awesome people) and we were in the process of moulding a nw socket and preparing to tray something a little different with the net result – the stump would still be help in place by a suction leg with a valve on the side to assist with controlling the air pressure therein, but we would be moving towards using a silicone “stump sock” to act as the interface between my stump and the socket this, in itself, is a topic in and of itself – I’ll have to post something down the road that explains how these legs work, and the types of artificial legs I’ve had over the last few years. This experiment would therefore allow me to keep my current level of activity, but the use of the silicone material meant that the skin on my stump wouldn’t have to bear the brunt of the damage. The organisation that offers support for amputees where I live had also added it to their free listings scheme under certain circumstances, so I could afford to make the move as well.

Anywho, by the end of Febuary, things got really bad I only wore my leg when I needed to, and generally hopped around everywhere or used my crutches to get around, which I’d started doing in January. One evening when I was changing the gauze and adhesive bandage, I literally tore the skin off the base of my stump – I felt it doubly because I used to use eucalyptus oil to clean the adhesive residue off my skin, and it stung my skin as a result. I took a week off work, saw the doctor to get some stuff to make sure it didn”t infected, and stayed off my leg for the week. At this point, we’re looking at it being the end of Febuary/early March.

Shortly after this lovely event, I received my new leg with the silicone goodness. To my relief, my stump had healed up completely within two weeks, and I noticed that the impact tearing on the other end of my stump (something I’d had for five years) had gone away. This was definitely a good thing! The tricky part wass learning how to control the leg with this different method of suction and keeping the leg in place. I had decided to go back to training before my wedding and give myself a break in the week or two leading up to it (which was in July last year) – I went back in June for a lessono, and then Wifey and I ended up getting too busy with wedding plans to have my going off to training again.

Shoot forward to late August/early September – Jyastin-kun and I head off on a Monday evening to go back to classes, and we get greeted with nobody there – it turned out that the Monday classes ended up getting cancelled in lieu of senior training being changed over to Monday nights (it used to be on Sunday nights). This put both of us in a quandry, as both of us worked Wednesday nights and we weren’t game to just show up at senior training after such a long absence (not to mention that our form was poor owing to a lack of regular training!).

My lucky break came in November, where I started a new job, and I no longer had to work weekends or late into the evening – the first week starting my new job, I was back at Wednesday night training. Uber.

Well, there you go – a long entry, but like I said, I’m writing this to record all the stuff that has happened with regards to my training. True, its long winded, but that’s not surprising – I generally waffle on too much! I reckon I’ll leave it here, and will probably post again on Thursday or Friday to talk about how tomorrow night’s training goes… if the heat backs off ;)

BTW, if random people (and not-so random people!) are reading this, feel free to add comments and stuff :)

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