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eddie103

The Adventures of ED

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:::There and Back Again:::


Due to a change in my circumstances, I had the opportunity to complete my first real long trip ALONE as I travelled across a

large part of Canada. I wore my "wee" legs and carried no cell phone (yep..........I'm an idiot). In mid August, I loaded up

my truck complete with my golden retriever "Lucy" and drove some 3600 kms to the east coast of this country. As well, this

was my dog's first trip away from home. She loves the truck. Always has.


The first day consisted of seven hours driving until I reached a place called Thunder Bay. I would stop once in a while and

try to get the dog out of the truck for the odd pee or whatever. It took a lot for her to settle down enough to actually do

something. Then she would race back into the truck which was familiar to her. Trying to get her into the hotel was a

challenge. I told the front desk that she was a "service dog" so that they would not charge me anything extra. Of course, I

then had to get her into the actual room!


The next day, we travelled over the top of Lake Superior to a small town this side of Sudbury, Ontario. This segment of the

trip took about nine hours of driving.


The only room available to me by the time I arrived, was the "jaccuzi" room which was fine. However, I could not use this

facility as I probably could get into the tub but for sure would be buggered trying to get out and would have made a terrible

site for the maids in the morning! So I never bothered.


For whatever reason, I couldn't sleep and when I did..................woke up (no clock in the room) and decided to

leave......................got outside the room with the dog only to stumble across some female sleeping on the

sidewalk!.............said "good morning" and got in the truck. It was 2:20am!!! so we left and drove.........and

drove................and drove.


We travelled through the rest of Ontario, down through Montreal (I hate Quebec!!)..........made it through the city and

managed to fumble our way to the south side of the river through all kinds of construction and French only

signs!!.............and drove...............and drove for a period of sixteen hours straight until we ended up in some putsy

motel called the "Ritz" in Edmunston New Brunswick. The next day we travelled to my final destination. The skin on my stumps

blistered out from being in the sockets for so long and would take the better part of two weeks to heal.


For the whole trip, the dog never dumped and never ate anything.................poor girl was upset!!


As of last week we reversed the trip and came back the way we went. I was considering going through the States but I didn't

know the requirements of getting a dog through customs.

Lucy did better on the return trip..........well, at least she left the odd "gift" here and there along the way!.

From this trip, I learned a couple of things:

-that I can go anywhere, through anything
-perhaps not travel with a dog. She was good company though!
-get a cell phone!!
-have CDs for those areas that there is no radio reception
-washrooms at truck stops are not necessaily good for the leg impaired!!

ED

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So, I have been "working" with a newbie BAK whowas cut up last September. I was told that he did not want to try prots and was told that he never could use them anyway...............so he had given up. I went to see him in rehab last January and wore my little legs. Once he saw these and was made to understand them, he decided to at least try a set out. He has been in rehab, with little legs, for about six months now. To date, the professionals have only allowed him to use a walker and refuse to put him on canes. As well, to date, he has never fallen (cause they won't let him) and does not know how to get up if he ever does fall (cause they won't teach him............stupid 'eh). So the word now is that they are booting him out of rehab at the end of this September! ("he's plateaued / he is as good as he ever will be / he will NEVER use canes / and on and on")

So, I asked this newbie if he would be interested in a bit of:

:::Real Life Boot Camp:::

Buddy had agreed to come out to my place in the country. I warned him that the place was NOT wheelchair accessible and was NOT handi-capped equipped to any degree. He was also to leave his pee bottle back home!!!

So, he arrived Friday evening. He was wearing his little legs and used a walker to get himself to the deck where he somehow got himself up the deck edge. His wife fauled all of the rest of him...........his back pack, wheelchair, floor board, other stuff and drinkin' supplies.

So he makes it into the house.

So......I tell him to "get on the floor and strip the legs off". He doesn't know how 'cause "they" never showed him how. So I did..........and then he did.

The object of this weekend was to get Buddy to live some of his like not sitting in a wheelchair all the time.

Well, first things first. "Before we start drinkin'........................TOILET!!......down the hall...........STAT!!. So I showed him how I get from the floor to the seat and down. This he did. This was Good!

Next was stuff like "floor to toilet across to bath tub, get in, get out and back to floor". He did stuff like "floor to bed and down", "floor to couch and down".

My favourite was "floor to chair at kitchen sink to get your own drink and down". He did this many times for one reason or another. Then he went to do the lift...................lost it............and fell flat on his back. I burst out laughing!!!! This was the first time Buddy had fallen and I enjoyed it!!!!..............cause people like me WILL fall...........so get used to it.

The next morning (Sat) we awoke, scooted around a bit and I decided to do a bit of "leg work" with this guy.

I taught him how to don his legs on the floor and how to get up from the floor and then back down to the floor to take a break or adjust the dam things. He did these things.

Too easy...........next............two hand canes..............showed him one of the 'techniques". Now, the goal was to walk using two canes down the hall, turn around, walk back to the start, and get down on the floor to recouperate. He did this!!

Holy Crap!..............tooooooooooo easy. So....."alright smart ass, NOW the goal is to do the same thing...............but.............with ONE cane!!!. Use the wall to bounce off with the shoulder if necessary. Away you go"............................and he did!

Not only that but the bugger was sooooooooooo excited, that he walked with one cane...............the whole length of my kitchen............grinning all the way!!

Bottom line............I / we, had taken this guy from walker to one hand cane........IN ONE DAY!!!

Other stuff we ended up doing was to walk out to the truck after getting down from the deck / get into the truck (BIG truck) / go to the diner and back / get out of the truck / up the deck and back in the house and then down to the floor to recouperate.

ALL OF THIS WITH A GUY THEY ARE WRITING OFF / A GUY WHO THEY SAID WILL NEVER USE CRUTCHES OR TWO CANES / A GUY WHO JUST NEEDED THE CHANCE TO LIVE!!!!

ED

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A giant pat on the back to you and him ED.

I've learned through dealing with several therapist over the years that they are trained to never let anyone fall. It seems that in their schooling, if they do let a patient fall, they fail the course. I had to insist they teach me how to get up off they floor with legs on. I already knew how, but wanted to make sure they did. I thought it strange that they hadn't suggested it.

I bet when Buddy went back to therapy following your Boot Camp, the therapist took credit for his achievements.

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Good for you (and Buddy, too), Ed! You did a good service there, and he sounds like he was well up to the challenge!

I've mentioned before that I "fired" my physical therapist after several sessions spent trying to get him to LET ME DO SOMETHING with no success. I know that there ARE some fine therapists out there--thank goodness I had several good ones while going through all the adventures that led to my amp--but it does seem like there are people who feel their job is to "make it possible for you to be disabled," as opposed to "making it possible for you to live fully despite disabilities."

I've always found it odd that the best group of PTs I ever worked with was from the rehab/convalescent facility where I spent an awful lot of post-surgery time. Maybe it was just that there was so little they could do with most of the "convalescent" patients, so they went crazy working with those of us in the "rehab" group! At any rate, they seemed up to trying anything, and they usually succeeded in getting me to try it too! I owe them for a lot of my independence.

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To Kep:

"I've learned through dealing with several therapist over the years that they are trained to never let anyone fall"

What these putzs need to do is train people how to fall and how to get up as part of the overall rehab....................not just peeing standing up.............."ok, you can go home now!!" Leg amputees and epecially bilaterals.............will fall.............many times............so train them!!!!!!

I get so pissed off at the whole system...............no matter where it is. It's like they want to keep you crippled!! And especially in their treatment of BAKs. They just don't have a clue or idea on what to do with us in any aspect!!!

ED

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They broke the mold when they made you, Ed. :tongue: Buddy is lucky to have met you. Good job.

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Ed,what a good friend and teacher you are! I agree with you completely with it's better to deal with how to do things rather than just not doing anything! I had my surgery and stayed in that hospital for 1 week, they then transferred me to another hospital who started the physical therapy. I was actually very healthy, but just weak from the months of being sick. I was there for 1 week....I breezed through everything they wanted me to do and the last day, my therapist said..you can't go home until you get yourself down on the floor and figure out a way to get back up in the wheelchair completely by yourself. I thought he was crazy at first because your legs are still pretty sore at that point, and I was weak, but it only took a couple of attempts and I figured out how to pull myself up in to that chair and I felt like it was quite an accomplishment! I then went home and off and on for the next year went to a different place a couple of times a week for physical therapy in between being back at work and I never forgot that therapist at the hospital who asked more of me than I thought I could do at that time. He was amazing. When I started walking again, I made sure and went back to see him, I think it made his day. Your friend will never forget what you have done for him.. You have shown him how to begin to get his life back. Thank you for being such a great teacher...you've made a difference..

Flip

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Hi Ed,

Sounds like you have done a good job there, and, like Flip says, your friend will never forget what you have done for him, I think we always remember particular points in our lives and those who help us through. I think that being able to get yourself off the floor is one of those fundamental things that everyone needs to learn as you are not always going to have other people around to help you, and during my rehab stay last year saw that this is something they are still showing new amps to do, at least they were there.

Not sure though about therapists not letting you fall, maybe thats how it is now, but didn't used to be. As a 12 yr old learning to walk, I was taken outside on the roughest stoney ground, no health and safety concerns in those days. I still remember falling on the floor whilst I was learning to walk,( at the time I was wearing limbs a bit like stubbies that didn't bend at the knee and had wooden rockers) the physio refused to help me up saying I had to learn, at the time I thought she was one of the meanest people on earth, but it did make me learn how to get up, as she probably would have left me there all day, I have never forgotten but never been stuck on the floor again either.

Ann

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I,ve decided to enter a bit of a letter that I have sent to my former physio therapists. Even today, in this aprt of the world, they have little experience with people like myself so I thought it might help them in the future:

Post Op…….almost seven (7) glorious years being a BAK Amputee!!!

I was a victim of a motor vehicle accident in January, 2003. I had spent the better part of two years in hospital and the Rehab Gym until I was finally let go to live my life to whatever degree. In “my” time, I was told that I was the only BAK amputee to “successfully” manage articulating dual prosthetics in anyone’s experience within the Rehab Gym, in the previous twenty or so odd years. As of this date, 2010, I am what I consider, seven (7) years old as a bilateral AK amputee (BAK).

During these years, I have adapted to my life quite well, I suppose, in being what I am. It took me about three years to adjust to what I am….to get used to living “slower and harder”. It took this long to accept the “speed” that I now live my life. Also, during these years, I have become aware of many other BAKs…….some of who are not as “good” as I am, and several others who are so far beyond what I am, that, at times, I am embarrassed as to what I can do. Today, I still strive to be what these people are!

For me and the other BAKs that I have met, we all have one thing in common. We all have, regardless of skill ability, what we call “modes” of living. These modes are:

1. Wheelchair use,

2. Life on the floor and NOT in a wheelchair,

3. “Stubbie” or some other configuration of shorter locked knee arty legs, and

4. Full articulating leg sets.

Depending on our individual skill sets, the percentage of use of each of these modes varies. For the “newbie” BAK, the wheelchair is used most and arty legs etc., are used less. For the most advanced BAKs, their full arty sets are used most and the wheelchair use is zero%. Myself, I currently fall somewhere in the high middle of this group.

The following are my personal experiences and very personal opinions on each of these modes. They are to be considered for any BAK regardless of their age, health status or medical condition. They are based on what I have lived as well as my experience with many other BAKs who have lost their legs from disease, accident, or some other inherent medical condition:

Wheelchair Mode

At first, all BAKs acquire a manual wheelchair. These chairs should be as light weight as possible, easily strippable, have back rims of no larger than 24 “, and a back set as low as possible. The front castors should be at least three inches in diameter and no larger than six (6) inches in diameter. The chair should be ordered by a qualified Occupational Therapist and set for the current size of the individual. Whether the chair is a collapsible one or a fixed frame should be determined through serious conversations with the patient.

I recently met a “newbie” BAK whose chair was ordered through SMD, two sizes bigger than he is. I suppose they think he will grow into it in the future but in the meantime, this thing was totally unmanageable for self loading and unloading into a motor vehicle and is totally unacceptable within the confines of a normal home.

Power chairs should never be considered for any BAK unless the person is quite elderly. One of the biggest enemies of being a BAK is weight gain. A BAK needs to maintain his weight as much as possible. A manual wheelchair (where the BAK solely wheels himself) is perhaps the only way he can exercise himself enough to help control this weight gain.

From the first day that I entered the Rehab Gym way back in 2003, I allowed no other human to push me around in my chair. I used to do several laps at lunch time everyday of the hospital’s overall complex. I have used my chair in marathons and otherwise would wheel myself up to the mall and back (8 kms), three times a week……just for exercise to help keep my weight under control. In my opinion…..power chairs will kill any BAK.

While attending the Rehab Gym, a BAK using a wheelchair either for the interim or for the long haul, needs to be taught several things while using this chair while still in Rehab:

1. How to get on the floor from his chair as well as getting back into it.

2. Transferring (without a board) to a couch or chair and back to the chair.

3. How to self load his chair into a motor vehicle and reassemble it after unloading it.

4. How to ride it properly and be in total control of the chair.

5. How to fix basic mechanical problems with the chair in case of emergency.

Life on the Floor Mode

Every BAK, in my opinion, needs to learn how to live aspects of their life………..on the floor. Sitting in a wheelchair for all eternity, is not a good thing for the remaining body. Hip flexors contract, the spine gets lazy and the core of the body starts to what I call….puddle. A BAK is NOT a Paraplegic and should not be treated as one!!! The BAK’s remaining body is fully functional and feels pain. It needs to move…….just as before the loss of the legs.

In my home, there is not a wheelchair. I leave it outside or in the back of my truck. Indoors, I either “scoot” on my butt, crawl on my hands and stumps or ride a device I had made that I call my floorboard. For me, this is a simple a thirty inch (30”) circle, padded and mounted on five equally positioned castors. I had the HSC Eng EMAT team produce it for me. It is highly maneuverable and fits through any standard doorway in my home.

From this device or directly from the floor, I lift myself to the kitchen counter and down, to the couch and down, to my bed and down. I ride it to the bathroom and lift myself to the toilet and down. I have many other uses for it in my daily life. It is far superior for mobility within a home than any wheelchair. I have one residing in each part of the country I travel to. The use of this type of board, crawling or scooting along with all of the required lifting in order to function, tones the muscles and helps burns calories. Besides the inherent quality of being much more “normal life”, it is in my opinion, far more acceptable compared to living and dying in a wheelchair.

In “butt” mode, I ride my ATV and snowmobile. I cut my own firewood from trees that I have felled with my chain saw. This I pile for the winter months even though I have to chuck each piece some four times before I pile them. I cut my own grass while riding a yard tractor that I adapted. I do a lot of things in “butt” mode that I used to do before loosing my legs……….again, only slower and this took me a long time to accept but I have.

===============================================================

BAKs, who have chosen to attempt life in artificial legs and have been issued liners for their future prots, should be encouraged to wear them as “boots” on their stumps when not in legs and start to practice bearing weight on the end of their stumps over time. This I can do. In fact, I can stand on my stumps now for as long as I want, with liners or without. Aside from this, the liners are the best thing that I have come across to protect the stumps from damage.

Bearing weight on one’s stumps encourages bone growth at the ends of the remaining femur. In my case, sure I have the odd bone spur, but my femurs are both “bulbous” from standing on them. I thank God for this fact!! Many professionals here call me an oddity because I can do this. I know for a fact that this works, that it is encouraged in the States and I have personal knowledge of many BAKs who have attained this advantage. Even if the person can at first only do it for a half second or so……the advantages are huge! It gives them a full stump’s length more in height and reach and makes their lifts from the floor or even a wheelchair for that matter, that much easier.

Before I start commenting on “stubbie”, or short configuration and full articulating legs, I would like to comment on several aspects of the system that I experienced concerning the “rehab” of a BAK as I have experienced it.

In “my” time (2003), no physiotherapist on board at the Rehab Gym had any experience in dealing with a BAK. In many ways, I was treated as a one legged person or perhaps a Paraplegic, both of which I am not. It seemed to me that, in fact, that nobody within the health care system knew how to handle me and my situation.

It was decided by my leg guy to build my first set of legs with articulating hydraulic knees that locked with the flip of a lever. He decided to do this based on the reports of my progress from the Rehab Gym.

Perhaps in some ways, I was lucky to have a physiotherapist who wanted to take some chances and we ended up unlocking those knee units …….”to see what will happen.” Looking back on things and knowing what I know today, perhaps this was a mistake. Perhaps I should have been afforded the “stubbie” leg and short leg configuration in the first place before attempting full articulating legs!! In my opinion, this would have shortened my learning curve.

I have met several BAKs like myself, who were afforded the best of the best of the full leg set….the C Leg computerized knee. Yep, we all have the best equipment available on this planet but, for most, they ALL failed to “get going” and many just quit trying to use their prots.

A new friend of mine named Mike lost his legs from an accident at work…some seven years ago. He has and has tried full articulating legs with the C Leg knee unit and failed so he gave up. Today he is now starting all over in his “stubbie set” and you know what? He was dancing the two step with his wife the last time I saw him. It was the first time he was dancing with his wife in seven years. He is very exited to do this process and is looking forward to getting his full set going in the future.

True “Stubbie” Legs

Since “my” time, I have become aware of many BAKs………….all who have started out in stubbie legs from the get go. Stubbie legs are simply the socket, a very short pylon and a small rectangular “foot” with some tread on it. The feet are set to a proper balance point by the leg guy.

From the get go, the person is forced to learn balance. NO additional supports other than an initial helping hand are allowed. When they fall, the person is just toppling over and can easily catch their fall. Let’s face it; they are only toppling maybe 12 inches or so. After the person gains balance, function and experience, he is built a little taller a bit at a time. In time, the leg guy will add a single axis locking knee to allow the legs to fold for driving etc.

The immediate effects from training in stubbie legs in my opinion are:

1. The person is vertical,

2. The effect on the person’s mind is immediate and extremely positive,

3. Training for stamina and muscle tone is immediate,

4. Conditioning of those muscle groups required for walking without a human leg is started,

5. Contraction of the hip flexors is arrested,

6. Attaining balance is very doable,

7. The person’s confidence is immediately increased.

I have personally observed two (2) BAKs go from living in their wheelchair to being vertical and “walking”….ON THEIR FIRST TRY with a bit of help!!

Once the “stubbie” legs have been extended to a more functioning and desirable height, many BAKs decide that this is all they are interested in attaining. I have seen a person in short stubbies complete a two mile walk……..he was “hurting” though when he was finished!!

Some decide to go for a more “human” looking foot rather than the stubbie foot. There are trade offs when a person does this. In exchange for a human looking foot, there is more difficulty in walking with the full foot and the person has to waddle a bit more but at least they can wear a “human” shoe. This is important to some. To me, it does not matter……..function is more important!.

When a person gets to a certain height in stubbies, this is what I call the short leg configuration, whether with a stubbie foot or a “human” looking foot..

In my opinion when in Rehab, once a BAK, using extended stubbies or short leg configuration, is capable of using a walker and makes it once around the circuit in the gym, he should then be given a set of canes straight away. The ultimate goal then would be to reduce these canes to ONE as soon as possible……only to be used when necessary. Again, once the person makes it around the circuit ONCE, you should immediately take away one cane.

This is the ultimate goal for a BAK using non articulating legs………… using ONE cane as a final result!!!! Once a BAK has attained this, he will naturally get to use NO cane within the confines of his environment. In my opinion, he will ALWAYS use one cane out in the real world………which is not a bad thing.

I would like to give you an idea of what can be attained by a BAK using short leg, single axis locking knee configuration. This was one of my days last week. At no time did I use a chair for any function. I do use one cane for outside traveling:

1. Got up and dressed in my legs, drove to the dinner, had breakfast, paid and then back into my truck.

2. Drove to town, took my laundry to the Laundromat, returned to my truck, went the bank to do some business.

3. Back in the truck, went ATV shopping, new truck shopping and headed to Canadian Tire.

4. Did all my shopping at CDN Tire. I intentionally walk every aisle of the store for exercise. I use a shopping cart while doing this. When a bit tired, I rest for a bit leaning on the cart……..back to my truck and loaded my stuff and myself.

5. Off to the grocery store. Again I use a shopping cart and I do every aisle and then some. Pay for my stuff, back to my truck and load my bags and myself again.

6. Back to the Laundromat and pick up my stuff.

7. Off to another bank to do some more business

8. Do A&W through the drive thru.

9. Head back home, stop off at the general store in the country to buy some liquor. Have to handle the door and climb four steps to get into the place.

10. Get back in the truck and head to my cabin.

11. Unload every bag. I can only carry one or two bags at a time so it takes me a while to do this. If I have fifteen bags to move, it means ten trips to the truck.

12. Enter the house, drop to the floor and take the legs off. The rest of the work I do while I am in my floor mode.

13. Proceeded to get a bit drunk!!

=============================================================

Time in the Rehab Gym is currently used to try to get a person to walk again. It should also be used for training in day to day life functions and circumstances in all modes of function for a BAK.

A BAK, before discharge, using any configuration of arty leg, should be trained in:

1. From standing…….getting down to the ground and back up,

2. Getting out of his wheelchair using one cane only and sitting back in it,

3. Putting his legs on while on the floor,

4. Adjusting his legs while on the floor,

5. Sitting in legs in a regular kitchen chair,

6. Toileting in legs,

7. Getting in and out of any motor vehicle,

8. Carrying a cup of liquid while in legs,

9. Doing steps and curbs, and

10. Getting dressed

Full Leg Configuration – Articulating Knees

BAKs who attempt to do this already know that they are trying to beat the odds. I have met two BAKs who are totally functioning in hydraulic knee units. This is very rare. These two individuals were born with congenital defects and have lived their entire lives without legs so this is a big factor.

The remaining BAKs that I know, all are using the C Leg computerized knee system. Some are less skilled than I and there are several who are beyond my capabilities. What the latter do with this system is truly remarkable. They have attained their function through time, experience, pushing their own envelopes every day, hard “boot camp” training and having their systems tweaked to their individual situation by experts who understand the system in order to find the “sweet spot” with the settings on the knee units. Here in Canada, there are no experts able to do this and no one to tweak me.

BAKs using the C Leg not only have to learn how to walk and function on articulating knee joints, they MUST also learn how to take advantage of the system itself. They must learn to trust their equipment and how to “ride the hydraulics” in order to do stairs and down hill slopes. They MUST learn the techniques and processes of each function they are attempting to master.

Each activity attempted requires practice, practice, and more practice. For example, with the C Leg units, it is possible to get out of a chair “normally” or to control the knees so that one can bend at the knee to pick up a set of keys from the ground or tie one’s daughter’s shoe laces……and then “pop” back up. It is possible to drive a standard stick shift car or carry your child on your shoulders while walking. I have seen this!!

Life in C Legs is an adventure. As far as I can see, there are no limitations for a confident BAK in C Legs. Aside from this, all the BAKs I know also still rely on their “stubbie set” or wheelchair for certain functions. As well, they all, as I do, crawl around and live part of their lives on their butt or on the floor.

I am a BAK. I have no legs. I have no knees. I still have my life, the remaining parts of my body, and I am trying to live as well as possible given my situation. In my chairs or on my prots………… and I am still trying. I will survive!!!!

ED

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:::Off to the South Carribean..........Again!:::

Last year while in port, I was docked beside a Holland America ship. I looked at the deckware and it was all new and the impression I had was that it “interested” me.

Now traditionally, Holland America was known then as catering to an older crowd and I have never bothered with them. While at the airport, I struck up a conversation with a young female thing I ran into there..........................."How was your holiday?.......................What cruise line etc"............"Holland America" she answers......."How was it" I ask......"Really good" she says………. "The best time she ever had had."

So based on this conversation and an itinerary that interested me, I decided to book a trip with the Holland America line. Over the past year I considered cancelling it but ultimately decided to actually go. This was to be the first time I have cruised totally alone and if I found that I was to have a good time, I would consider continuing cruising, and if not, perhaps this would be my last cruise and I would then find something else to do in my future. This was to be my fourteenth cruise.

So, I arrive at the airport......wheel myself around.............and find a human waving the Holland America sign. "Is this where I am to be?" I ask.................."Yep" she says........... "Well, I'm going out those doors to have a smoke......come and get me when you're ready"......................Later, I turn around and she says "We're leaving now..........follow me over there and we'll catch the bus"........so off we go.

Now when I travel, I wear legs, am in a wheelchair and drag my own luggage along behind me (kind of like a trailer).

So.......I'm standing up..........looking around and say to myself "Crap, where's all the young people??" I'm behind an old guy......he's telling the bus driver...." I NEED the front seat". I'm saying to myself............ "Pal, you've got frickin' legs, if anybody's gettin' a front seat.......it's ME!!" but I say nothing.

So we all climb up the steps in the bus while I am telling myself that this cruise was a BIG mistake. All of a sudden, the movement of the line stops..........what's going on??? Turns out that some woman ahead has dropped her oxygen bottle and her old husband is scrambling to hook her up again!!!..........................."This cruise is a BIG mistake!!!!"

I get to the ship, get on board, find my room, settle down, de-leg myself and head off. There is NOBODY in the hall and I have a hard time finding anybody. Well……… I find them all the next a.m, in the buffet. They don't see me.............I am fast in my chair..........so I whistle all the time hoping that they will hear me. I end up smacking two of them in the stomach with my fist before they fall on me....................I'm sorry.......it's a reflex now.

It took a couple of days (as usual) for people to get used to me.......after that I was ok.

On the first day at sea, I met Celine. She was on a scooter and has no legs...........so off I go to introduce myself (I'm a sucker for another amputee). We talk a bit and then she asks me.........."Does it get any better?" As soon as she asks this, I know her story……..she’s a newbie. "Why do you say this" I ask. She says "Well, I wish I could get into my bed (on board) but it is tooooooooo high". I offer to come to their room to offer my advice.............but I am a stranger.

The next day, we all hook up in the smokin' area and off we go to their room. I spent about an hour and a bit flopping around, showing her how to get into bed on her own. I talked about her wheelchair, life as I know it, and other things. The next day, I run into her and she says "she got into bed........by herself". I tell her........"Everytime you can get out of the scooter or wheelchair and sit on a real chair or sofa..........do it. If you stay in the chair.........you will die in the chair.

Every day after when I would see her, she was in a normal chair......being human. I am pleased.

I met a lot of people on this ship. I learned a lot about life from them. I know that I can go for as long as I can go.............regardless of my situation.

On this cruise line, all is accessible..............no worries. The service was more than I have experienced, the food was far superior to what I have experienced and the entertainment was better than I have experienced. I WILL be on this line again......many times as I am now approaching the age group of this line’s clientale.

Now before I go, I must tell you the final story about Celine.

Now up to this cruise, her husband has been doing 100% for Celine.........................good on him. So the last day before the cruise was over was to be the "island" day. I ask Celine if she is going a shore..... "No" she says. "Why not" I ask.......... "Well there's sand and whatever. I tell her to get her ass on the island ...........no excuses...............there's concrete to wheel on and no reason why she cannot be there. Well, the next day we all meet on the island and have a great time. ...................consumed a lot of stuff at the bar etc.

Well the day ends and most people are gone so we head off to the tenders to get back to the ship. We're in line waiting and George shows up. "Have you seen Celine?" he asks. We say " No"........... "I can't find her " he says. He's pulling out his hair with worry. Later, he comes around again. "Have you seen Celine?" ............"No" we answer.

So we are on the tender. Along comes George again…..even more frenzied. "Have you seen Celine?" ........."No" we answer "and if she was on board, she would be sitting here with us".

So I tell George "If it was me, I'd get off this boat, keep on looking...........I'll ask at the main boat to see if she is on board"............ So off he goes............. I get on the main ship.............."I need to know if anybody from room 8032 is on board" I ask. They say “Yes”........ I say " Are you sure. Well you need to radio to onshore and let the crazy man know that MAYBE his wife is on board."

I get to my room.....call 8032 and Celine answers. "Celine, Celine.........you've been a bad, bad girl!!!" She says "She knew it was time to go and she was so excited and pleased to make it all the way back to the by HERSELF"......... I said "Well maybe you should tell George what you are doing from now on. He’s still on the island, out of his mind with worry, looking for you".

We all had a good laugh over this. Later George tells me that he checked every washroom on the island looking for his wife..........................I told him......................"You know George..........Celine is now free..................methinks you will need to put a GPS locator on her!”

Celine gained a bit of her freedom during this cruise and it is a direct result from meeting someone else like her………only “more seasoned”. When I find myself in the position of affecting someone else’s life in a “good” way, it gives my life some value.

ED

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You're amazing Eddie. Sounds like a great trip. We'll see you in Kansas City.

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You are amazing Eddie....my daughter is on a Holland America cruise right now...On her way to Vigin Islands, etc... from the emails I have received, she is loving it. I'm glad to know just how accessible the ship really is.

You change peoples lives Eddie and that is pretty great :biggrin:

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:::A Little Flash of Genius::

I write this a little after the ACA conference in Kansas City. I could write about the conference, and how “good” I was during that time. I could write about all the new people I met and how many great times I, once again, had while there. I could write about meeting all my old friends, how they remember me and how the experience totally reboots me every time I am there. I could write how, it seems, I have influenced several people..........yada..........yada.......yada.

I choose to write about an experience I went through with a one legged woman I met named Anne.

There are times in my life that I am “sharp”. ...................that my wit is perfect and blunt as well as true!! I believe my meeting with Anne was one of those times. Sooooooooooooo.............

At the end of the day.......which I do not remember, after walking all over the place in my big legs............no cane!!!.........going from “zero to ninety”(in my mind) all weekend long!! I strip the legs off and headed to the bar........(I don't “drink and walk” although I did experiment with this combination on another night!!!.......(hey I've got to learn my limitations!!)

So, I am in the bar talking to all these other people. I am using my chair. I get up and stand on my stumps 'cause I hate being shorter than anybody else...............and we start talking. During the conversation, I meet Anne...............

“I really envy you..............travelling all over the world etc” she says. “What do you mean?” I ask.

Well, she says that she has only travelled once since loosing her leg and “packed” her leg as luggage!!! She would like to do more but she is afraid of what MIGHT happen if she wore it.

“What could possibly happen?” I ask . “But, what if this”, she says and......”what if that etc, etc, etc”. I answer her and tell her to simply wear her bejesus leg at home, sit in a chair for six hours and see what happens. IF anything happens.......learn it, experience it and deal with it! We talked about many situations that she would generate an excuse for, and I would immediately respond with an answer that made her think. At any rate...........off we go........................

The conversation led to what, I personally believe........and I do not care if I am right or wrong 'cause I know I am right!!!! (and Anne either laughed her butt off or simply said “I never thought of things that way”):

* I do NOT consider myself “handicapped”.............that is for the too old, too fat, too ugly humans of this planet. I consider myself “modified”.... I am “an almost” master of cutting edge technology. ... a thing that very few get to experience or achieve. I possess a skill set now that I never had when I was just plain old, boring normal.

* The others of the human race stares at me NOT because I'm F---K-d.......they stare at me because they are in envy!!! I do what average humans can not! They stop ME and say that I sooooo inspire THEM!!

* Some sub humans “Wannabee” me or are so “Devoted” to my very existence and others find me soooooooooo Sexy!!!

* I am higher up the evolutionary scale.......if I need a new part, I simply replace it. Those other lowly humans need to suffer by being cut up if they need a new knee..........I do not!!

* I look at the majority of other humans my age and they are weak, flabby and old!! I do not look my age. My body is strong from morphing to my metal.

* I belong to a select group of people who, when they get together as they did in Kansas City recently, can out dance, out party, out talk, out laugh and generally out do any group of average humans! Collectively, we are true social butterflies. We embrace each other and acknowledge and admire the abilities of those we meet regardless of their configuration. We use and wear our kit that costs more than a normal's new car.

* I have soooooooooooo many advantages over the lowly human being. .........I don't need an RV. I can stretch out in the back seat of any car. I float in my own bath tub and do “laps” if I want. I will never drown....it's impossible for me. I can share my bath tub with any woman.........and there's room for her!!! When I stub my toe....it doesn't hurt. I need not worry about arthritis in my knees or artial disease, bone cancer in any part of my legs, ingrown toe nails or athlete’s foot. Mosquitoes don't bother me. Dogs can chew on me all they want. I can fit into any crawl space where other lowly human will whack their heads and complain about their stupid knees. I wear shorts in the winter while other sub-lings moan about the cold. And on and on and on....................

Yep, life is great when you are a superior human being ...........when you are an “Amputee”.

All amps need to realize this truth. Being blessed with the ability to adapt and overcome the experience of becoming a superior human, being a master of an artificial leg or arm or two, a master of the wheelchair, a master of crutches, the cane, the walker..........needs to recognized by my fellow peers.

True AMPUTEES are superior......that's it..............that's all!!!

ED

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Yes! Yes! Yes! Thank you Ed for reminding me how wonderfully superior I am! Thank you for inspiring me and making me laugh. You are definitely one in a million and I have a big secret crush on you :rolleyes:

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You make me laugh. I've never looked at amputation from that perspective. You should be a speaker at the next conference. You are an inspiration. You do more as an amputee than lots of normies because you refuse to say no or can't.

I'm truly honored to have you as a friend.

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Ed

I have just had my laugh {to start my morning} You are unbelievable Ed...so much fun to listen to and I would imagine to {:smile:} be around. Yes, I agree you should definately be a speaker at the next conference. Have a great day.

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I agree with Neal and Ann. Please be a speaker at the next conference.

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Gee thanks you guys...............first of all Neal, you won't even give me your phone number to add to my "I'm half in the bag, I must call everyone in North America list!!" and Marcia.............I never new!!!......of well, sucks to be me!!

As far as a speaker at a conference.......you all know I am a bit shy. I call myself a "closet BAK".......not like some of the others who flaunt what they are!! I do much better just jabbering at the bar!!!.....and hey...........I'm working on a new song called "I was made this way".............by Eddie GaGa!!!! may need some help with some of the lyrics but will get the bsall rolling in a bit.......

ED

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::: Past The Point:::

I have written much over the years. I started the “Adventures of ED” as part of my process…………of becoming what I am, of what I will be. Initially, these adventures were to tell of my progress, to yell about what I have done, to tell stories as I evolved. The “Adventures of ED” has served me well and perhaps others along my way.

Today, I am “seasoned”. By that, I mean………… I am what I am. I have been a BAK (bilateral above knee amputee) for almost ten friggin’ years now. I may become more. I may not.

My “Adventures” have ended.

Today, some nine years after the fact, I intend to use my “Adventures” as a vehicle to state certain things and opinions that I have come to learn and believe.

Today, the 8th day of July 2011, I am well past what I call “the Point”.

The “Point” was a time in my life when, for whatever reason, I chose not to hear and accept the professionals most learned opinion. I chose to try to be what I am and will be!! The professionals told me that I would never walk again, that I belonged in a power chair, that I could not stand on my stumps, that I am totally buggered, that I MUST rely on the efforts of others, that I am below normal human status.

I chose not to accept this and I have exceeded this "Point".

So now, I will use the “Adventures of ED” as a vehicle to challenge the system, to encourage others to be what they can be. I will use the “Adventures of ED” to pass on what I do, what I achieve, what I am!!! When I fail…………it does not matter………what matters is that I tried.

I can only pray that in my lifetime, Heather Mills continues this site so that my ramblings may be read by by others…………..hopefully to their benefit. In the meantime, some of what I write is going to South Africa, to the United States, to Australia, to the UK. As such, it soothes my soul.

I would encourage any “seasoned” amputee, no matter what their configuration is, to write about themselves and their journey .

I will occasionally continue to post for as long as I can and spew about my life.

I am ED and I am content with myself.

ED

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You are truly admired Ed. I'm so happy, blessed, excited and joyous that I call you my friend. Keep your adventures going. You haven't seen the world yet. I hope that someday I can join you on one of your expeditions. Conference time isn't long enough.

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NEVER stop spewing, Ed. You inspire us all.

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:::Tweedle Dee and Tweedle Dumb :::

I, in my personal experience, believe that any health care system in place today that I am aware of, is designed and set up to keep a "modified" person.........crippled.

Now, I know that the intentions of the health care system are good and that they are concerned about one's safety etc, but their intensity is so great that it can, and does, permanently cripple people.

Definition: "modified person" - anyone who is changed from their original issue or state of being, be it through stroke, amputation, becoming paralyzed, sickness, disease, or any other life changing event.

All persons who fall into this category must become aware of what I am stating. If not, they will become a victim of the system and the quality of their life will be affected.

There comes a “Point” in everyone's recovery that a decision MUST be made, that one MUST be aware that a very important and lifelong personal decision MUST be made.

=====================================================================================

To amplify my views, I offer the story of "Tweedle Dee" and "Tweedle Dumb"…………………

"Tweedle Dee" and "Tweedle Dumb" are two younger women I met when I was fresh cut. We were all in the rehab hospital at the same time. All three of us, as well as many others, were trying to regain our lives. We were running on adrenaline.

Both "Tweedle Dee" and "Tweedle Dumb" were around the same age. Both of their injuries were a result of separate motor vehicle accidents at around the same time. Both girls are paralysed from the mid chest down. "Tweedle Dee" is single. "Tweedle Dumb" is married with children. We called these girls "the Bobbsie Twins".

All three of us, and others, were offered and accepted what the health care system deemed necessary for all of us to be what we would be..................to "recover" from our injuries. Many people know what happened to me and what I am.......but that is another story.

So time passes, and "Tweedle Dee" and "Tweedle Dumb" are completely healed and are discharged from the rehab hospital to live their lives as they will be. At that point in time, occupational therapists came into play, phycologists came into play, social workers came into play, home care workers came into play, other professionals and advisors, experts and companies came into play, insurance companies came into play.

There are so many people employed on this planet because of people such as "Tweedle Dee" and "Tweedle Dumb" and myself.

All of these "experts" told the girls what to do, how to do, what is available what is not, what to NEVER do!!........ and the girls began to live their lives.

-====================================================================================

There comes a “Point” in time in any "modified" person's life where they have to choose to either accept what the" experts" say, savour it, understand it, consider it and then decide to accept the “experts” guidelines as gospel or tell them to piss off and the individual then pushes his or her own envelope.

"Tweedle Dee" has done this either consciously or unconsciously. "Tweedle Dumb" has just accepted what the ”experts” said.

Today, " Tweedle Dee" lives on her own in her own home. She hauls her ass out of that chair to get on the floor, to stretch out, to move. She sleeps in a bed of her own choosing. She works her body with weights and washes her own floor. She transfers herself to bathe. She drinks beer like any man and then some, has made a trip to the Caribbean completely on her own, drives herself around and manages all aspects of her own life as well as she can. She wheels herself around in a manual chair and is as fast as I am!! She has a "quality" to her life.

Ya, I know, and she knows, life can still suck at times but then everybody's life sucks at times.

"Tweedle Dumb" has a power chair ('cause the experts told her so and it is "easier"), now suffers from pressure sores and is to remain in bed 24 / 7 until they heal (maybe), still sleeps in a “hospital” bed, does not do anything 'cause everybody else does it for her, has a Hoyer lift and other humans to get her in the tub."Tweedle Dumb" has put on weight. She has not travelled and relies on systems to do what she has been told she can not do. "Tweedle Dumb" has accepted, to date, what the system tells her WHAT she is. "Tweedle Dumb" is crippled!

The truth is, the system can, and will tell you, what you will be…to a minimum standard only! It does not tell you what you CAN be!!!

To avoid being a "Tweedle Dumb", I would advise all "modified" persons to seek out and be aware of others who are similar to themselves, who are what I call "seasoned" in their situation………….those beings who have had time in their current state………………who have made it past this “Point” I talk about. See how they are, talk to them, and realize what you may become. Some of these others will be "Tweedle Dumbs"........but many will be "Tweedle Dees". Learn from them and remember them when your "Point” in time, occurs.................because it WILL!!

We are all different.......and yet.........we are all the same.

This is a true story.

ED

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Good advice, Ed! I've told the story of my utterly useless Physical Therapist who spent our sessions telling me that I could not swim without a lift to insert me into the pool and then hoist me out...that I shouldn't walk on uneven ground...that I should avoid climbing stairs...and that, from now on, I should only ride a stationary bike, as a bike that went anywhere would be "too dangerous." And I'm just your basic BKA! I can't imagine what he'd tell someone who was facing REAL challenges!

"Yeah, that's how he works," my leg guy told me when I griped about the PT. "And if you challenge him, he'll say you're 'not willing to cooperate' and discharge you. I'd suggest you fire him first and get on with life."

And so I did.......... :biggrin:

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