Of course it is an important subject. Of course it is that one item/part/region that some people stare at all the time.

The arm stump, the defunct arm, the residual limb, the disabled arm, the disability. I may cover it up, wear stump warmers or attempt to wear even an artistic prosthesis – but it still is undeniably there, the uneasiness that a covered stump creates is at times palpable, and some even asked me to unpack it so they could take a closer look. Yes. Folks like you are terribly voyeuristic. I, we, know. At the latest after a few years of being exposed to such, we smell voyeurism a mile against the wind. True interest in another person is entirely different, we smell that a mile against the wind, too. And the folks that are truly disturbed when seeing a person with a handicap, that is another thing. But, who cares! No one actively navigates to “About” pages any more these days, so it makes sense to keep visuals and my narrative about “what happened” separate. And those people that, themselves, experience a fall-out, a melt-down, when encountering a person with a visible handicap, they might consider getting that looked at by a professional. But I do not think it falls to us, as people with a visible disability, to not only bear all the social weight of our own handicap, bear the permanent phantom pains, deal with the ever-present technical and skin/overuse problems, and then, on top of all that, also drag everyone else across the hardships of immature communications. The drama has to end somewhere.

As Cloerkes so adequately puts it, people – at least some – will be nervous, disturbed, and distressed if confronted with a visible disability – so, only if they can peek without me looking, only if they can approach this slowly and at their own pace may they eventually develop an understanding and feel less tense. If at all. But one has to clearly consider that encountering a person with a visible handicap, particularly limb loss, may be so devastating to some people, that they may even resort to very heavy-handed means to exclude us from participation in their circles, to attribute violence or mental health issues to us, and other wild things, possibly as a means to make their own massive incompetence in dealing with this shit at least a bit less unbearable. Conversely, I know people like that, and I risk to exclude them too – because who can bear a colleague sitting at the same table when drinking a beer, sweating in streams from being so stressed out about this, or those that cannot wrap their head around the fact that a physical handicap is a bit of inconvenience and maybe it looks not so good – but the damage kinda ends there.

At the same time, other non-disabled people ask me directly about the hosed arm, being aggressively up-front: that approach is considered taboo – which, as a general etiquette rule, does not necessarily help those that must satisfy their greedy curiosity. But having such a taboo in place also puts me at ease, because talking about it mainly gets really boring and strenuous after a while. I fucking know the story, I know it ad nauseam. To me, this is not of any entertainment value per se. In some instances, after giving in to questions, and after a while, I did wonder, whether these people do have any other relevant subjects to talk about. So I get bored easily. And when I do get bored in such a way, black / dark humor slips in, which does not make it easier for other people either. So when I say, read this shit here, rather than asking me – it is better for others, too. Also, there is some well-meant protection included: not all private stories, particularly the deeper aspects, make you sleep better. And it is not really about me – mainly this story includes some other people’s really dark secrets and the things it can trigger in those that are too close have been rather serious.

So as I, as the disabled person here (you surfed here on your own account, forgot that already?) seem to be the one in charge of handling my pro-active communication (not the general public, and certainly not that one particular intruding person that believes they are here to save me from whatever, or to call me an inspiration to cover up their need to dig deeper), I am to acknowledge that sheer voyeurism – which clearly brings also people such as you here – has an alleged role in getting people in the ‘general public’ to relax. So once you can get an eyeful so you can rest is the suggested basis narrative here. On the other hand, it is my exclusive right to keep information to myself.

I feel as if we – as a general public, as a society – are on one side entirely hysterical about disability – people commit suicide, run ape shit, forget their medical duties regarding clear legal rights of the patient, grossly misbehave – and on the other side, we are completely frozen, shut up, missing perceptible dialog of any normal dimensions for the most part. If a disabled person comments on their subject, a ‘circus performance’ is assumed and non-disabled people will listen, clap their hands, go home and shake their heads. We know. We all know. If a non-disabled person dares to comment, it will almost automatically lack authenticity and depth, and of course – how would you know otherwise. So we are already living in a somewhat segregated society, one that has an inside world and an outside world, one that – as an example, on a very drunk party night shortly after my amputation, when everything also of this was still so very new to me – had three members of the so-called general public stare at me for enough time, like, over an hour, with constant teasing, until I walk up to them, present them with an absurd possibility of seemingly impolite theoretical options, banter though, upon which they did not apologize, but remained silent, and left the premises. Also, that alcohol probably did not help. This is a world that often lacks ideas necessary to generate words necessary to generate a normal dialog. Once the disabled person is teased continuously, maybe particularly in excess of an hour, maybe, just maybe, things will become irreparably screwed then – even without physical damage, things just won’t be the same anymore. Since then, I found a whole range of creative ways,  also to address adverse staring, and, various ways to communicate across even that wide border or gorge of approach – and still, with such widely differing approaches, there seems nothing left to repair there. And once attitudes become apparent, shared, expressed, where there is nothing whatsoever to gain from any social angle, best to not engage in any back and forth, to begin with. And of all worlds, this must be a world that leads you, one of the many (mostly mute) visitors, here. Crazy, isn’t it.

Amelotatism and other projections

Zunächst auf Deutsch, für alle, die sich hierher verirren, vielleicht sogar ohne zu wissen was da mit ihnen selbst los ist: wenn Sie nicht selber betroffen sind, sind die Chancen extrem hoch, dass Sie hierher gekommen sind, um sich meinen kaputten Arm anzuglotzen. Also um das zu tun, was man sonst als gaffen oder starren bezeichnen würde. Nicht betroffene, nicht-behinderte und damit sog. normale Leute kommen hier vermutlich nicht hin. Das ist insofern OK, als sich dafür eine Webseite in geradezu hervorragender Weise eignet – also, besser hier glotzen, als echte Leute damit ärgern. Damit müssen Sie allerdings eben zur Kenntnis nehmen, dass normale Menschen sowas nicht tun, also, kaputte Arme anstarren. Um sowas besonders gut oder nur schon besonders interessant zu finden, muss man wohl auf eine eigentümliche Art besonders gewickelt sein. Dafür können Sie vielleicht nichts – aber wenn eines fest steht, dann, dass es nicht mein Problem ist, sondern Ihres. Machen Sie sich nichts draus, das ist hier wie bei vielen Leuten, die öfters angestarrt werden, mehr als zu Genüge bekannt [DEUTSCHE VERSION].

Nine times out of ten you came here to do some staring. That’s alright, I rather you stare here than in real life. But just so we talked about it, well, chances are high you came here because there is something wrong with you. Don’t worry, I know [ENGLISH VERSION]. That does not mean that I blindly approve. But, I know.

How does it look

This part is more interesting for anyone that starts to build any type of prosthetic arm, and that benefits from real data to start with, say, 3D-design and 3D-printing.

The arm ends 6 cm behind the wrist. This is a long below elbow amputation stump of the right arm. The end is somewhat asymmetrically rounded. The scar unites inside and outside skin that was cut as fish mouth flaps. The skin is sensitive and due to wearing a prosthesis requires a certain amount of skin care.

If you are interested in its shape and need to work with data to kick off a model design, look at the 3D shape (STL, VRML using Blender or any other software of your choice – update STL 09.12.2020 [link]).

What is inside

Both radius and ulna are cut almost at the same level, with the ulna slightly shorter. There are three major nerve stumps some 2 – 3 cm behind the end. These are tender and hurt if I bang the arm and it seems that I have two neuromas there, super explanation why it sometimes hurts so much there. Other than that, there are some muscle packs that I can contract and use to generate signals with. There is less bone and less muscle than on the left arm.

How does it feel

There is an almost constant phantom sensation and by now constant mostly medium to serious phantom pain. This is neither particularly distracting or an impediment to sleep though. There are triggers that make it worse, and there are triggers that make it better. The stump is not cool to be squeezed too much, or banged, it is good to be careful with it.

Cold feeling, red or blue discoloration, congestion

My body may be hot and I sweat yet my arm stump has a distinct cold feeling and pain, even while sweating too. My body may be very comfortably adapted to the temperature but my arm stump is clearly cooler or cold, it is painful, I have stump pain, maybe also phantom pains.

I found this most likely to be due to congestion and that is due to limited tissue fluid circulation. For long arm stumps such as mine this is a known issue. In a normal arm, constant hand motion moves the forearm muscles which then milk the tissue fluid back up the lymphatic vessels. With no hand, no milking effect occurs, tissue water accumulates in the stump and congestion of the tissue ensues.

Even when I just want to warm the stump by wearing a woolen sock, a cotton sock or by running hot water over it, neither the coldness nor the pains are remedied. It may even make it worse.

What always helped me was to compress the stump as a first thing to do. I wear a compression sock made from the same fabric used to do compressive leg socks for people with leg edema. Alternatively, I use an elastic bandage that I wrap extremely tightly around the stump – it is better than a compression sock when the pain is extreme as I can apply a lot more force to the bandage. And only afterwards – if at all necessary – I wear a warm sock over that. Also I could hold the stump in an elevated position, that would help decongest the arm stump too – but that is often not so practical. Imagine sitting in a cinema and your arm stump stuck up. Not a good idea.

Wearing a moderately small silicone liner for my prosthesis also applies constant compression on my stump. That is why for me, wearing my prosthetic arm with a narrow liner and a well fitted socket amounts to protection from bangs (which otherwise hurt me a lot) and to protection from too much tissue congestion.

Is it useful

If you came here because you also have an arm amputation and you wonder, do I have to sell all of my computer games, do I have to sell my toys and sports devices, does my residual limb still has some relevant function – this is for you.

In short, don’t sell your games and toys, your sports devices, or your computer. I do not make that up – people in support groups wrote that. The stump length is useful to carry items, to operate switches, to type, to fix dishes when washing them, to hang clothes, or to hold items against a surface such as when tying shoes. The skin surface is useful as I feel with it, as it is not as slippery as the prosthetic surface. It’s shape is very useful as it provides for fitting a prosthesis. If I use the stump for medium heavy work I protect it with a sock or wear the prosthesis for really heavy work – which is why I cannot understand why prosthetic arm manufacturers specifically label their prosthetic parts as ‘not for heavy usage’. What did type of situations do they believe they were meant to cover? Hold up my hook as ornamentation in a tea room? And if they do not provide wiggle free heavy duty prosthetics, who did they believe would provide these parts then?

And I use it for typing as well as for a bunch of other stuff. And a whole lot of more stuff. In short, the stump itself is useful. It is worlds better than nothing at all there.

I also play Neverball – and to not forget too much about using the disabled arm I use that as well as the left hand (which I do for the most part).

The iPhone is a bitch to use one-handedly.

Using an integrated trackpad / Cherry keyboard:

Exercises

I generally look after myself – particularly after back and shoulders to prevent strain and overuse. I also use some adapted grip patterns for my left (remaining) hand to reduce elbow and carpal tunnel overuse. For general well being, I periodically like a bit of a swim [check this].

Social aspects

One aspect of walking around as if nothing were wrong is that it has to be cemented into peoples’ brains that any such damage is contained. And that disability is a visible fact of everyday life. It could be you, tomorrow. Not that you really came here to learn that.

Links

Other views on the subject of arm amputee or hand amputee and dealing with public appearance:

• Derek Douglas

Working past the handicap with using a prosthetic arm

If you are interested in more work related and difficult work applications, comparing body powered and myoelectric arm technology, here is an informative summary [link]