My amputation was considered "elective" because I did not lose my foot in my accident as a child or through a disease like diabetes. I had an arthritic joint as well as other severe foot problems; I could have lived on pain medication for the rest of my life, living with the side affects, health complications, and loss of life quality in the process. Eventually the pain would have intensified - as it was steadily climbing - and I have no doubt I could have lost my job simply because you can't work in a drug-induced haze, at least I can't. Living on pain pills is not the answer.
In definition only my amputation was elective. For me, I thought it necessary to restore my life as I wanted to live it: my free choice, not an elected official or bureaucrat or medical screener deciding for me. I now live without the constant strum of pain, the limping, the not wanting to do anything requiring much walking, and the cost of medications. Also my body's organs are not dealing with various drugs designed to make me comfortably numb.
As I've written in earlier posts, amputation was not something I wanted to do, but given the choices, I knew I had to do it in order to get my life back. It was hard bargaining and nothing I wish for anyone, but I had a choice, whereas someone in an accident may wake up missing a limb that they had only minutes or hours before. The mental trauma may be worse than the physical.
I have talked to several people looking into elective amputation. After they have researched the subject and talked to others like me, they know what they want: it is an end to their pain and suffering and to get their lives back. They don't want to shuffle around, be forced to sleep on the couch with the TV on until they pass out from exhaustion, or dread walking the dog around the block.
Time and time again I have found those looking at elective amputation are well informed, and mentally have come to terms with losing a limb to regain their lives. It is not an easy thing to do, far from it, but there is often another battle this person faces, and in many ways far more personal.
Enter the prospective amputee's family and friends. After giving this much thought, I have come to the conclusion that in most cases, these people react as a trauma amputee would. This was not something they have been giving any thought to and it is a shock to their systems. They do not have the same knowledge or perspective as the one looking to get their life back. They take it personally, as if they are losing their own limb, and often react in shock, horror, and disbelief that anyone would voluntarily choose such a thing.
Now when the person considering the operation needs the most support, they are often made to feel guilty for wanting to take this courageous step. Personally, I was extraordinarily fortunate in that I received very little negative feedback, and only one person tried to talk me out of it. I suppose even that one person was not so discouraging as I took a good look inside to think about anything I had not considered, given the permanent aspect of this operation.
So to family and friends of the person electing amputation over a broken life, consider a couple of things. If you've ever had a root canal, think about the pain and suffering you were in until the time you had the tooth removed (not unlike an amputation) and then replaced with an artificial one. Your friend wants to end the daily pain and suffering they are going through, not only from a limb but from the loss of love of life they have so enjoyed. If limb loss gives them their lives back...who are you to deny them this joy?
Secondly, if you are truly interested in helping and understanding your friend, arm yourself with knowledge. It has never been a better time for amputees and particularly active ones with modern prosthetics than now. This blog has tried to be an honest diary of my own journey, but read about others, such as Kelly Luckett, Jason Gunter, Dr. Tom White, Amy Palmiero-Winters, Sarah Reinertsen, Amy Dodson, and many, many others. Some elected to have a limb removed, others lost their limbs through trauma, disease, or birth defect. If you really want to see what it is all about, volunteer at Gettting2Tri Foundation (G2T) or Challenged Athletes Foundation (CAF). You will find the answer there.
I am always happy to talk to anyone going down this road and meeting with family members if Jennifer and I are able. I think seeing and hearing from an amputee goes a long way to easing the minds of the prospective amputee's friends and families. Just remember someone with limb loss does not become an alien being other than they may become a happier person you haven't seen for a long time because they have been in pain.
From time to time I think of how my life would be today without limb loss. I cannot think in any substantial way that things would have been better. I would wake up and within a couple of minutes on my feet the pain would intensify until I would start limping. Limp to the car. Limp to my desk. Oh please don't call me. Oh you did...limp to fix a printer problem. Limp to lunch. Limp home. No, I'd rather not walk the dog. Take pain med. Go to sleep. Repeat. Forever. Never run again. Never hike. Never live.
Never. Never. Never.
I have been working on this post on and off for a while and will likely update it as I move through this experience. I hope it helps others understand a little more about this serious decision. For family and friends of your hurting loved one, please try to understand what they are going through. Your support is needed, no one is asking anything else from you.
If your loved one can do this, then you can too.
Let them live.
(Note: I have a more recent posts about elective amputation. Part II is here and Part III is here.)