I have curious friends that ask me all kinds of questions. Other people are very curious but don't manage to ask what they want to know. From many chats and discussions I figured it would be helpful to put up a FAQ Frequently Asked Questions. This even more as the assumptions of the outside view can differ quite a bit from my reality.
Are you happy and well?
Executive summary - yes, most definitely and very much so.
But obviously, things are not as simple. Don't understand me processing limb loss the wrong way: processing is normal. Anyone would go through a process. I am not keeling over or in despair. In my instance, the other option - limb sparing surgery - did not appear to really promise a better quality of life at all - one would have to obviously face a hill of still disfiguring surgery, pain, complications, perhaps several surgeries, all with further risks. And properly having tried, evaluated and discussed medical or surgical alternatives with a very good medical team is extremely important - that, I cannot overemphasize.
It takes adaptation to make a new body feel as well adapted to as the previous 40-year old one. Sometimes I don't wear the prosthesis as I feel more "me" without it - sometimes I feel more "me" wearing it and no matter what, the looks of it still feels strange all the while the action aspects start to feel real and while the hand never felt 'absent'. So it feels totally different from how it looks. You probably cannot possibly understand.
Amputation was performed April 2009. As of October 2008 I started to feel time intervals of half an hour or even longer where my brain forgot that my right arm stump was an issue and where things started to feel 'normal'. As of December 2008, I felt nothing wrong at all for several hours. Since February 2009 the question started to be "what are*you* looking at?". Things improve. Since July 2009 I don't feel anything wrong for almost a full day, maybe a whole evening.
Sometimes I feel devastated - but mostly about the time when I was not well and about what happened then. There are issues about the way things were handled that I am not processing well. It gets to me seeing someone else missing a forearm and a hand. Sometimes I look at the stump and I feel like I'm in a free fall and stripped of any safety or security, often I look at the scar and feel outright nauseous, and I am then very happy the whole ordeal is increasingly becoming a thing of the past. Sometimes I see my arm stump and think this is a really bad nightmare and I'll wake up. It's not ugly - but sometimes that arm feels like that "weird thing" the surgeon left me with. But I am definitely happy things went relatively well and I am healthy again (disabled maybe, but healthy).
Not looking at the arm definitely helps. Two things feel like they are missing: the visual and practical aspect of a hand. The feeling of the hand being there - that is not missing due to a brimming phantom sensation. So wearing the prosthesis is like wearing glasses in a way. Compared to my situation before, this is a very good situation- all things being relative.
Amputation was a hugely effective, hugely affordable and immensely rapid treatment for my extremely painful situation - let there be no doubt about it. Postoperative pain, phantom sensations and phantom pain - these are nothing at all compared to my previous situation.
Immense pain relief after the amputation made me sit on a very very euphoric cloud number nine for the first six months and only since that, I am getting back to a more balanced mood. Even before the amputation I went through some post traumatic stress, dissociated this and that, and cannot remember everything from spring 2008 - there are faces from around that time that, for example, that I cannot place anywhere any more. But that is all past.
Overall I am very well, sleeping extremely well at night, focusing on work and finding back to sports and regular activities.
Phantom sensation and phantom pain
I have an almost constant feeling of the hand being clenched into a brace, it is dripping wet, it feels extremely tense and it is entirely rigid. Obviously my hand was fixed like that for quite a while before it was amputated and so that feeling being stored in my brain apparently makes sense.
At times - such as several times a week or so - phantom pain occurs in that pain spots will flicker over that virtual area of my hand, burst to a sharp pain like fireworks, then subside. At other times, my phantom pain takes on the quality of tingling, needles, aching or bruising. There are times it feels like I majorly banged my hand. My stump tends to pain fairly often in that it is cold and congested. At other times it hurts due to mild injury. These also worsen the phantom sensation and pain. Overuse of the tendons and muscles are bad, and when I start to pee with a full bladder - the whole phantom sensation and phantom pain flares up like a 500 liter gas lake that is hit with a hand grenade.
I was always a really tough cookie when it came to pain and in relation to what I went through beforehand, this is relatively harmless to me. Things are extremely relative. I will understand anyone who suffers from these pains tremendously, extremely, falls into a depression or worse.
Mindset being everything I am not letting the phantom or stump sensations or pain distract me from what I want to do and I can say that since the amputation I have gone back to sleeping like a teddy bear without any substance use (such as alcohol, sleep or pain drugs). I started to work on the neural mapping aspects after reading some of Ramachandran's stuff and it did start to improve things a little, and at the same time got worse a little, so I stopped with the mirrors after a while. Now I wear a compression sock or bandage to compress my stump if congestion becomes too much, I do enough sports and try to stay away from situations that trigger pain.
In terms of real pain - that's gone. All the rest is stuff that my brain warps around by itself, mostly.
Do you wear the prosthesis all the time?
No, but that does not feel particularly weird to me. People expect a lot of unrealistic things about upper extremity prosthetics though. Some people asked me whether I would 'upset them on purpose' or why I would not wear the advanced models 'they had seen on television'.
I use a cable controlled prosthesis, and so you can see a cable - and, no, that is not done to get people upset as has been claimed. I was normally a 1-layer person, 1 shirt, or 1 t-shirt. As I have to wear a t-shirt underneath the harness (to protect the skin) and a shirt or pullover to cover it I risk to get hot and to avoid that, I preferably wear short sleeved shirts (as I did for the last 20 years). And so somehow, that prosthesis is visible. Big deal: all arm prostheses are or become visible if not also audible as none are a perfect imitation of a hand, so to hold that against me, the wearer, is just plain stupid. I do not assume these prosthetic replacements to be such perfect imitations - do not get me wrong here - but it would be good if you would not assume that either.
The one thing that happened to me biologically at the amputation is that my arm is shorter - and that's it. I mean, end of story. It did not change my temperature preferences, I still feel hot or warm as I regularly do sports - but people forget that nothing else at all changed. Not my sense of humor, not my taste, clothing preferences, interests or ability to question or verbalize. Only a musculo-skeletal specification.
I have a long residual limb so my options for wrist units are technically limited and in order to rotate mine I need to be able to access it and so rather obviously you can see that part as well. And I just had to get a mechanical arm for now: myoelectric prosthesis are rather expensive, relatively unreliable, quite sensitive compared to my mechanical device, and by the type of currently available sockets they are extremely uncomfortable. I tested a technically perfect myoelectric arm they set me up with and posted the results, read them if you are interested. Myoelectric arms are perfect for other people, but with my rather long and strong arm, with rather strong shoulders and a preference for solid, sensible, light weight and comfortable solutions, I am in a position to take advantage of the mechanical aspects. And wearing an Ossur Iceross Upper X silicone liner with a pin lock ice just about the most comfortable and sturdy fit you could ever think of. To hold that against me is equal to being entirely ignorant about prosthetic choices and their technical background.
On my prosthesis, I can switch out the terminal device, and I do that quite a bit. Mainly I use the hook for practical purposes, it has a good grip, sturdy function and light weight - I can dirty it up and clean it again and if I ram it up somewhere there is no big issue of damaging the hook. Some people tell me its appearance distresses them, some say they have no problem with it, some think it looks cool. The hook is rated positively as honest, sturdy and proficient, negatively as ugly by other people, some said it had a distinct science fiction appeal about it.
I use the prosthetic hand mostly if I do not need the hook function and if I am in a somewhat social setting. The hand is reported to be less distressing by some people - but its PVC or silicone glove gets irreversibly dirty, and is rather easily damaged so I minimize prosthetic hand usage. The hand is rated positively as not so distracting, negatively as unrealistic.
The prosthesis-free stump is rated positively as natural and honest (by most of my close friends), negatively as upsetting (only by a few older acquaintances). My godchild and some colleagues have a clear and outspoken preference for the stump rather than any prosthetic part as they feel it is more authentic, and the reverse is true for some grown up friends. Wearing a stump sock has been unanimously rated less appealing compared to the uncovered arm but it is sometimes comfortable as my stump can get cold.
Now, wearing the silicon liner constitutes stress for my skin that I counteract by taking specific measures. If possible I let my skin recover from wearing the liner, and so there are times when I wear no prosthesis for a considerable amount of time. In other words, not wearing the prosthesis has distinct dermatological reasons. For swimming, I wear no prosthesis.
All in all support groups strongly advocate to go by my own requirements and so I use the hook if I wear the prosthesis and no prosthesis if ever possible. I wear the hand if I figure there are people that cannot deal with either of the two other modes of presentation, including myself as I also sometimes feel that way.
All of this really has become a no-brainer since a while and I don't consider it too much any more - but people assume I 'want' to distract them by not wearing the arm, by wearing it, by wearing the hook or by simply being present. There may be interesting psychology or even psychopathology behind such assumptions or projections. Conversely I start to not at all feel too different from beforehand - just that my parts now come apart. I start to be able to blindly hit targets with the tip of the hook (light switches, keyboard typing), and so my body incorporates these new parts as 'own' and reacts in a similar way as if an anatomical hand was present.
Weirdly enough, some psychiatrist asked me whether I feel "happy" to get rid of my hand generally and because of some analytical psychiatry considerations. It felt like "no" back then but now I would feel that this question is fully obsolete as firstly I don't really "miss" it (the feeling is far more complex, and if anything I'd miss a particular function just like missing a tool, I mess the completeness and fluidity of my whole fluid self extending out into all fingers) but while that is a self-understood thing, secondly, my body adopts the new situation including prosthesis as my own. And so in terms of completeness, I am getting to a point where I adapt to not having a (biological own) hand, in part as I do adopt the prosthetic substitute. For that, it must offer hard finely grained control, good reliability and the option for me to forget about it - so, no service or maintenance issues that are distracting. The brain adapts by itself and no particular work needed - that process started right away after the amputation. So I don't feel "happy about my hand gone missing" (which is a weird thing to assume) - particularly as it does not feel at all like "something is missing". It *looks* like a hand is missing, a hand *is* missing - but it does not *feel* like it. My phantom sensations are relatively strong. And in all likelihood you cannot possibly understand. Also, I am getting used to my replacement parts as my brain's plasticity is at work. And to feel complete definitely feels good. I out in my prosthetic arm and feel more complete, like a big weight is off my chest, and it feels very happy inside. But it does that even with the cosmetic arm. Other amputees tend to get asked similar questions by psychiatrists. Obviously some mental models have their limits.
And so even if it looks different to you - I am slowly and currently getting to the point where I know not much different and everything is getting back to normal here:
H. Henrik Ehrsson, Katja Wiech, Nikolaus Weiskopf, Raymond J. Dolan, and Richard E. Passingham Threatening a rubber hand that you feel is yours elicits a cortical anxiety response. PNAS 2007 104: 9828-9833.
We have demonstrated that when people experience that an artificial limb is part of their own body, they display the same emotional responses and defense reactions as when their real limb is threatened. The fact that similar levels of activity are evoked in identical areas as when the person's real hand is threatened suggests that the feeling of ownership of the artificial limb is of such a degree that it fully replaces the real limb. Furthermore, our results reveal that the strength of the ownership-illusion (or the activity in multisensory areas reflecting this illusion) predicts the neuronal responses in areas associated with anxiety when the hand is under threat. Together these findings provide strong objective neurophysiological evidence that the rubber hand is incorporated into the body. Specifically, it shows that the physiological state of an owned artificial limb is subject to monitoring by the brain's emotional system, suggesting that artificial limbs can evoke the full range of feelings associated with real limbs. - We noted enhanced activity in medial motor areas when the rubber hand was threatened, but only when the rubber hand appeared to be part of the body. (...) It has been suggested that tools may come to be included into the body representation during extensive tool use. Tool use may cause changes in visuo-tactile integration and in the receptive fields of visuo-tactile cells in the parietal cortex, so that it appears as if peripersonal space extends from the hand to the tool. Further, tactile sensations can be projected to the tip of hand-held tools during manipulation. However, phenomenologically, we do not experience tools as part of our own body. Thus, the detection of visuo-tactile correlations is insufficient for a body part to be fully incorporated into the body image. Our results suggest that, perhaps unlike tool use, changes in body ownership require the changes in proprioceptive and interoceptive systems. To produce the illusion that an artificial limb belongs to oneself, it is necessary to correlate tactile stimulation of the real arm and visual stimulation of the artificial limb for an extended period. This leads to a recalibration of position sense for the person's own arm. This recalibration means that as the needle approaches the rubber hand, it appears to be in peripersonal space and to represent a genuine threat.
How do people react?
Some aggressively start asking questions and if I don't wear the prosthesis I found some people would grab my stump to touch it, and I really and thoroughly don't like that. Others exhibit aggressive negative reactions or say very strange things. Can we go about things slowly.
Stigmatization and demonization are stereotypical reactions that are well known and rather well researched and if you come here with a negative bias, chances are very high you project your own fears rather than dealing with reality right now. Not surprisingly, I found that other amputees share strikingly similar experiences.
Largely that seems to be because these people are the way they are, they project their sometimes hysterical reactions on me, as they may not be able to adequately process their perceptions. Don't forget - this is a rather minor handicap inasmuch as practical issues are concerned - no need to blow things out of proportion one inch further. If they exaggerate their negative feelings, it may just be that they have serious underlying issues - but I find that I am not the right person to console or help them. Also, I am just a human and my reaction may be just as blunt as theirs.
Luckily most people do not seem to be affected too much. Most people realize that ultimately, it is me (not them) who went through a painful 1/2 year and ultimately, it was me (not them) that decided on the treatment with support of a word class surgeon, and that it is up to them to go, 'so what'.
I started to realize that the standard issue prosthesis can make people itchy and nervous by itself. Then I saw photos of myself with that prosthetic arm in standard issue skin color and had to admit that such an arm looks strange indeed. All of the current prostheses that are issued by technical orthopedics - cosmetic, myoelectric, cable controlled - look somewhat strange and alienating in my own view and when I see them on a photo on my arm.
So logically the solution would be in the product design: I decided to redesign the looks myself. My gut feeling told me to paint it all red. And to test out stuff. So I did, I call it my Red Hand / Red Arm series. The fact is that while a teetotally red arm still makes people speechless, it does so for a shorter amount of time, people react less irritated and more curious, definitely more relaxed and more open. Rudolf Steiner's theory regarding nervous kids explains why. Life has been improved by a more colorful technical design in ways hard to transmit to text.
Would you make the decision to get this radical type of treatment again?
Strictly speaking it does not feel like it was me that decided this in the first place. I am myself when I am slept out and in full command of my senses. At that time, I was chronically and severely sleep deprived and haunted by chronic pain for half a year - and that is a very long time; some of the things that happened were influenced by that, at times by a lot of prescription drugs, some of which were administered by other people.
Some people are of the opinion that chronic pain and chronic sleep deprivation can rid you of your ability to testify for legally binding decisions, and I agree to that consideration now and looking back - but at the time, I did not feel like that was an issue (as the whole situation had come about gradually) and none of the doctors appeared to consider that.
Then, I had an extremely narrow focus: becoming pain free by any means fast and effective before becoming so depressed that far more devastating damage would happen. And I was depressed and started to get seriously suicidal. For me at the time, amputation was a very good choice as it got me out of that hole fast. People that believe in Swiss options for pain therapy and psychological counseling may completely overrate these in any given circumstance such as mine. I don't know how controlled you are, but in me, a lot of suffering may have released previously unknown impulsivity to rectify the situation.
And so 'my internal fire brigade' somehow took over to 'solve' the problem and effectively ran ape shit until the issue was over and done with for good. Seriously, it feels like my 'internal fire brigade' went bananas. I mean, I rang u the right types of people, went to the best place wide and far, the problem was solved in a technically extremely perfect way, the substrate for pain and mayhem is gone, no question - and these two doctors that performed the amputation sure knew what they were doing. The problem was solved fast, swift, economically, effectively and without further ado. I sometimes look at my arm stump with a combination of disbelief, technical admiration, and disappointment as well as huge relief.
Solving problems with a straight aim and narrow focus with little or no compromise may somewhat run in our family - and it seems as if I cannot take the advantages of that without living with the risks. And being such a person, and feeling cornered by people that do not offer any help, feeling cornered by chronic sleep deprivation and severe chronic pain, that looked like a recipe for rapid hard action for sure. In that constellation one has to view my mindset as a real risk. When I think back now I go 'whaaaaaa' (but a good colleague correctly remarked: others would have died).
So, I cannot say that I - in my healthy present state of mind - would make the same decision again, but quite along the same lines, there are a number of things I would have done differently. First and foremost, I would have sought world class help much earlier instead of working my way "up" through the hierarchical chain of order of local medical practitioners.
There is no crying over spilt milk and in such as situation I was in one cannot have instant pain-free treatment and some community inspiring non-invasive wonder healing at once. I accept the fact that one cannot see around too many corners into the future. I accept that one may not be able to always freely choose one's mindset, one's animalistic reactions under a fat overdose of a combination of midazolame, haloperidolum and fentanyl (which one of these wizards pumped me up with one glorious afternoon) - and whatever one ends up lashing out to do then. I accept that one may not freely choose what type of program one's own "internal firebrigade" calls up and performs in such a situation. I know that I had no choice of thinking differently back then. Ultimately it is the question whether I can accept such given constraints. Amputation was extremely effective as to the target parameters (pain, sleep, nodules), fast (several hours), virtually lacking complications and at the time rather urgent. Now I am extremely happy that in many ways extreme time is part of the past. Looking back I believe that by all means, that ultimately, a top medical support did the best we could eek out for me under given constraints.
Empathy ... for what?
Some people find it hard to be empathic about extreme pain and what their reaction causes: extreme solitude. They have a firm belief in the infallibility of painkillers. I really don't know where they get that feeling from. Medical and invasive drug therapies of severe and disabling chronic pain can be very expensive and surprisingly ineffective and in my instance they were. I was re surrounded by non-empathic people that believed in drugs and in what they fantasized my pain was. I felt so alone.
Some people find it hard to be empathic about the huge relief and joy that comes from being free of pain. When they do not understand pain, nor the failure of drugs that are supposed to act as pain killers, they will never understand what effective pain relief means. Then they lack understanding, and just so thoroughly. Yes, there are people that have no empathy at all for the magnitude of pain relief that I went through (maybe still am going through) since the amputation.
Experiences as disabled person can be depressing, sure - but they can also be outrageously funny, sarcastic, slapstick or weird. Some people find it hard to realize that I underwent amputation in order to go back to a previous life of good sleep at night, of having a slept out mind and body, and - among other things- of being able to again living my sense of humor. So I gave up an integral body part in order to be able to laugh again. A number of people are unable to be empathic with that.
"What do you tell a man that has been through a below elbow amputation? - - Nothing in particular, he has been told everything already."
Some people fail to be empathic about the fact that there is not the slightest way I can or will cater to other peoples' expectations when it comes to disability stereotyping - as everybody has their own and often unrealistic expectations about what I should (not) do, that they are not reluctant to voice to each other, behind my back, not having the guts to voice these into my face so I can ridicule them right here. Doing that, they miss the reality of things. That may be in the way of empathy as well.
So following some other people who made that point I am not "coping" with it or "dealing" with this - I am living with this. And if you want to find out about someone's life it's usually not enough to sneak around that person's back doors.
What about established powers in prosthetics?
The current issues of cable controlled prosthetics can be at least to a certain extent derived from browsing this website. You may very well think that I am not entirely happy with the current situation but I could not possibly comment.
Normally, consumer products improve through user feedback of problems and successes to manufacturers. You may very well think that something major must have been in the way of that type of improvement happening over the last couple of decades - but I could not possibly comment.
So I believe that it can be interesting to learn some stuff from more experienced people - amputees, prosthetic technicians or engineers. But unless their track record is very successful - and wouldn't we know that by now - I think it is perfectly alright to be rather restrictive with that type of exposure.