Amputee Stories Part Four

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Amputee Stories Part Four

Jackie Gay

I'm an amputee of just over 2 years, left leg, above knee, living in Birmingham, UK. I lost my leg in when the Land Rover me and my husband were driving across Africa in got tossed down a mountainside in a landslide. My leg was sliced off. We were in a very remote area and I wasn't out of danger of losing my life for a good month or so. Then the difficult bit started.... Looking back over the last two years I actually find it hard to work out how I got through it. So much pain, depression, endless setbacks and uncertainty. I'm still not out of the woods by any means (and have come to the conclusion that you never really are, it's a process, this being an amp business, not a state).

In February this year I had a stump revision because the scarring in my groin (left from an ucler the size of a tennis ball which nearly cost me the rest of my leg) got infected. Most of the scarring was incised (they couldn't get all of it out because of blood supply problems to the rest of my stump - I have a good collection of scars on it, it was sewn back together in strips) but I still have a few problems and haven't been able to wear an artificial leg for 6 months now.

Paradoxically, not being able to wear a prosthesis has made me face up to some stuff. Because I've HAD to go out, meet new people, go to new places etc. bare and limbless I've got over the paranoia about it. I still don't like people staring at me but it doesn't reduce me to tears any more. I'm much more comfortable with my new-shaped body than I was. I am having a new leg made which I shall be overjoyed to get, but it will no longer be the focus of all my hopes and dreams. There is no dream limb folks, and if you get any where near a dream prosthetist/surgeon/physio you're one of the truly blessed. These are facts, if a little harsh sounding.

As for the rest of my life, since losing my leg I've written a book, learnt to fly an aeroplane, started teaching again (although adults this time, not groups of over-energetic kids), helped my husband set up his business AND *newsflash* gained a place on a Masters Degree in Writing at Sheffield Hallam University. This only happened last week and I'm very excited. I have also been counselled by two people who I seriously think were more mixed up than I'll ever be, been put on anti-depressants twice but rejected them twice, screamed, raged and cried. Sometimes it's the day to day setbacks which grind you down the most (infections, bad fitting limbs, falling over, failing miserably at every day tasks) and sometimes it's the 'global' stuff like never being able to leap balletically around a room again. And sometimes it's other people's attitudes....

A few comments about the amputee list:

- we are all just people you know, and can't produce solutions to individual problems although advice and support are available (but not on demand) - there are controversial issues surrounding limb loss, how much you have to do with them is up to you, but they are there - I did feel some guilt when George P mentioned the Aussie lady whose son is a quad amp (whom no-one wrote to), because I would liked to have helped but was at a loss for words - her son's problems seemed so huge compared to mine I just didn't feel qualified to comment on the best way forward. Of course I should have expressed empathy & sympathy and do so now, I apologise for not responding to your voice, Anne. - people come, go, lurk, get busy, get some time, join and leave this list. It changes as we do. If you don't like it say so. I suspect that the reason most people leave is that they just don't have time to keep up, not that they are alienated by Ian or anyone else. Anyway, remember, this is not the (only) real world.......... - we are lucky to be electronically connected. Some of the people who have been amputees for a long time on this list know what's it's like trying to get by without this resource.

For new amps and others struggling out there, it does get better, if imperceptibly sometimes. The best advice I can give is to concentrate on the things you CAN do now, not what you did before your limb loss and can't anymore. Most disabled people do this - a friend of mine with rheumatoid arthritis who used to be a (concert standard) violinist and now can't play now sings like an angel instead. A paraplegic who was in the military is now a photographer.

There is lots going on out there and if you don't want to get involved in the disabled community a) what are you doing reading this? and b) examine your motives as to why not. I recently came across a professional dance company who number two people in wheelchairs and a bi-lateral amp in their troupe, as well as blind and deaf people. I'm going to see them in a month, so who knows, the balletic dancing may not be so far out of my grasp after all......

Thats all for now Peace & love Jackie

Michael G. Wilkins
I am (now) a double AK. Age 50's, came over from England in the early 60's. Was a computer type, but spent a lot of my time climbing, sking, caving, drinking, etc, rather than studying. A well-spent youth! Used to do a lot of caving back in England - Derbyshire & Yorkshire mostly, cave rescue, the whole 9 yards.

Back in the late 60's I was on a road in the central US , winter, middle of the night, ice storm and a blinding blizzard, stalled car, no verge, narrow road. Flares and the rest out all over. Got caught between my car and one going 40 mph - driver a power co. lineman who had worked been on the job 36 hrs straight, asleep at the wheel. I still don't really recall how it all happened.

Luckily for me, a snow plow came by in minutes, got radio contact for an ambulance. I was completely in shock, no pain - I recall (and this was confirmed) giving the snow plow fellows directions as to how to get the car off me, and how to arrange the various (floppy) bits of me. I'd had medic training with caving/cave rescue, climbing, etc, so knew what to (tell them to) do. Also no stranger to violent accidents - been in my own personal plane crash in England, during preRAF pilot training - walked away from that 'good' landing! And went on to get my license and fly. And been on the scene of a couple of bad aircraft crashes (like the DH 110 crash at the Farnborough Air Show - pieces missed me by mere feet - but not the people around me).

Anyway, I was rapidly bleeding to death, plus massive shock etc. The one thing that saved me was that the surgeon on call at the local rural hospital had just got out of the Army days ago as a battlefield surgeon - he told me later that it was just as if I had walked over a landmine. So he knew what to do too, for emergency care. Things now get blurry for 8-9 months. At first I was on massive demerol + antibiotics. The demerol turned out to be psychoactive for me - one huge bad trip, hallucinations - a bit nasty for a couple of weeks. Required heavy blood transfusions. They moved me to another (bit better) hospital once I was stabilized. Switched me to (massive doses of) morphine. Helped only a little. Severe infections kept me in isolation for 3 months or so. Nasty breaks in both femurs, L lower, and compound in R lower - essentially 2" knocked clean out. Fractured pelvis, other 'minor' problems. Had a surgeon who was determined to save anything, at any cost. Which meant that I was in the hospital 8 months, about 22 surgeries under general (11 with halothane, until the report on that came out - liver damage etc). I eventually got clear-headed enough to get the (totally messed up) L knee and lower leg off (no union after 6 months, enough!). Had major problems with bone union - the infections? - many bone grafts, eventually 2 plates in my L femur. Ended up with a partial union on the R lower leg, messed up R knee.

Then in '89, when I was working for the Univ of Ca, I developed, quite suddenly, severe osteomyelitis in the R lower leg (that partial union going to pieces at last, residual pockets of infection flaring up, etc). So I finally got rid of that semi-useless R knee and lower leg. Became a double AK. Takes more effort to walk - but no pain (except now and then). Use 2 canadian crutches in unfamilier places (mostly for information feedback I think), one or none around home, the workshop, etc. Unless I am very tired, or need stability for some reason, when I use a wheelchair (which I hate). Or some of those so-called executive chairs with 6 legs, big wheels. When I was getting (massive) doses of antibiotics for the osteo, I also got the 'flu, and things were never the same afterwards. Something like CFS (chronic fatigue syndrome), or CFIDS, or fibromyalgia, or ???? . The (good) physicians who now try to help me are unsure.

Some fairly major and seemingly permanent upset to my immune system, plus my circadian system. I had major sleep disturbances (means - I was'nt getting any level 4 sleep) - found that cyclobenzaprine stopped the cause - alpha nrem. But everything else goes on a 3 day or 3 week cycle. I do not feel the effects of major exertion for 3 days - then it hits hard, with myalgias, fatigue, migraines. And things go in 3 week cycles - 3 weeks of migraines (treatable with Imitrex), 3 weeks of myalgias (Naproxen), 3 weeks of extreme fatigue (no treatment found), etc etc. I also have 3-week periods when cognitive tasks are very hard - I used to be a very good programmer/systems/maths type, now that is beyond me for about 3 weeks, every now and then. All very puzzling. And annoying. So now I have long-term disability via Univ Ca (Prudential - seems a very decent insurance company, compared to others I have known. They ask sensible questions, have minimal hassle), and SS disability. Still manage to do some technical things now and then, in an advisory capacity - usually helping people with research of various kinds. I paint a lot (acrylics, water colors, landscapes) - but that takes a lot of energy (cognitive & physical). I am beta testing a new computer game. And overseeing a new house we are having built, doing some of the trim carpentry, all the low voltage wiring. Plus do some model building now and then - ships, mines. Plus a lot of computer graphics of the artistic variety (well, I try) - Painter, etc.

Martin Perazzo
Hi, I'm Martin Perazzo, father of Victoria Perazzo, a 6-year-old bilateral amputee living in Barcelona, Spain. Victoria lost her left leg several centimeters below the knee and her right leg at the joint due to a disease called "sepsis meningococcica" (as Regina M pointed out, it is better described as "purpura fulminans") which she suffered at the age of 16 months, barely five months after she had taken her first steps.

She was given only a 5% chance of surviving the first day. A neglected osteomyelitis infection during her recovery caused her to lose a crucial part of her radius bone in her right forearm and affected other parts of her skeleton, and she requires periodic surgery for bone-lengthening procedures.

In her six years, she has probably spent more time inside hospitals than out. I am currently fighting Victoria's mother (my ex-wife) to obtain the best possible treatment for my daughter, who I think deserves a lot more than what she's getting. She had been to the U.S. twice to get prostheses at Shriner's Hospital for Crippled Children in Philadelphia, Pa. and was doing fantastically with them until April of last year, when her mother, for entirely personal reasons, refused to take her back for a new fitting. Instead, Victoria was fitted in Spain for new prostheses in April 1995, and 10 months later has yet to adapt to them, fearing almost every step she takes in them. She is now confined most of the time to a wheelchair.

I have been a member of the List since November of last year and hope that Victoria will one day be a member too. Until then, I will continue to speak on her (and my) behalf.

Donnie Merritt
My name is Donnie Merritt. I'm a 22 year old guy living in Johnson City, TN, although I'm originally from Haysi, VA. (Middle Of Nowhere, for those who've stumbled across it, but it's home.) I'm the Weekend Director at WJHL-TV here in JC, a position I've held for about 5 weeks now. I went to school at East Tennessee State University, where I studied Communication and English. I make no pretense about being a master of either. ;-)

I'm a congenital Symes amputee (right foot) and a ?right wrist disarticulate? (missing my right hand - I'm not sure if that's the correct term or not). I marched in band in both highschool and college (hence the name "Hotstep" - I got this account the week of band camp and it was the only thing I could think of). I like hiking, camping, music, and food and beer. Lots of beer. I have a weird sense of humor and I like emoticons. Enough said.

I originally joined the list to learn more about myself. I had spent most of my 22 years in self-imposed ignorance. Being an amputee, even a congenital one, has always scared me. That's not easy to admit, but if felt good when I finally could. I went to the Shriner's Hospital in Lexington, Kentucky for most of my fittings, and it was an experience that still bothers me. The fact that I had a "normal" life - being able to run and jump and climb trees like my little brother when many those I saw there couldn't...well, you know...bothered me, though I didn't know why at the time. I'm still not completely sure.

The thing that has haunted me the most, though, was an incident with a girl who was only a little older than me. I guess I was about 11. She had been in a tractor accident and lost both of her feet. The doctors asked me if I would talk to her - you know, show her that everything was going to be O.K. I was mortified. When I saw her laying in the bed I didn't know what to do, so we just talked for a few minutes. I showed her my leg and told her about running around on my parents' farm. I tried to make her smile and she did, briefly. I'm not sure, but I think I cried in the car on the way home. I still dream about the whole thing, wishing I had known what to say or how to act. But hell, I was only 11. I've spent the remaining years being the "confidant", the one people asked for help when they were in trouble, always trying to make things right.....

In joining the list I was looking for other amputees. Just to hear people talk about things I understand, to know that there are people out there who know how big a pain in the ass getting fitted for a prosthesis is and so many other little things has been refreshing. And more than a little overdue. I'm learning things about prosthetics I hadn't thought of before and it is WONDERFUL -- keep up the interaction!

I also came to help. I've had to fight for respect before and I know how damaging it is. I wanted to make sure everyone knew that there are ways of getting around those little inconvieniences like stick-shift automobiles and computer keyboards. I didn't come looking for sappiness, I came looking for strengh, strength in numbers and in the power of One.

I still linger for all of those reasons, but for those who may have missed earlier posts, I have a new reason. A few weeks ago my grandfather had to have both legs removed, due to extremely poor circulation. As a bilateral AK, he faces problems I hadn't even thought of before. I now read the posts I had trashed before as being on subjects I didn't need to understand or cope with. (Ahhh , the arrogance of youth.......)

I can't say how active I'll be on the list now that I have the new job (not that I was very active before....), but I still want to hear from all of you, about issues facing older amputees or personal experiences with a new type of foot (especially if you're a hiker - I miss my mountains!!!) And I'll gladly answer any question I can or offer assistance to anyone who needs it. I live about 1/2 mile from the Veterans Hospital and medical corridor here in town ... I've even considered volunteering to help with new amputees and would like comments on the experience.

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this page was last updated12/22/04