Intro Duane 24

[duanefox]

Duanef [10]

Sep 22

I seem to be one of the few totally successful hemicorporectomy amputees. I was in excellent shape when I had the operation four years ago, when I was 20. I was involved in track, exercise and competitive running. Although the operation itself was life threatening, I recovered remarkably fast. Now, at 24, I am completely recovered and consider myself in perfect health. I've finished college, live alone, drive and have a good job.

I have cosmetic legs attached to the prosthetic that enables me to sit upright, and use the legs 100% of the time, even thought they are a little inconvenient.

I have many acquaintances, even a few close acquaintances, but no friends. Everyone thinks I am paraplegic, which I never correct. I feel that my amputation will result in a lifetime of being alone, on the outside looking in. I feel like I am walking down a street in the dark of a winter night, seeing others in warmth and happiness through their picture windows as I am forced to remain on the cold street. The outside looking in.

When I dream, I still have entire body. I've sought therapy and my therapist suggests that I try to overcome the denial 

[snowyh]

Wow, Duane, I'm amazed! Yes, you do seem to be very successful despite your disability; however, it is clear you are suffering quite a bit emotionally. I'm glad to hear you are seeing a therapist, though, if they are suggesting you are in some sort of denial because you are fully-limbed in your dreams, they are mistaken. It is common for amputees to dream able-bodied, even decades after limb loss and having adjusted well to same. I am familiar with the 5 stages of grief, and that denial is the first one on the list. I also know that the stages are not linear, they can take years (or forever), and no two people go through the stages in the same way.

It sounds like you're doing all the right things to be an independent, contributing member of society. I'm just so sorry to hear that you feel isolated from the potential of loving relationships in your life. Do you have emotional support from family members? Do you participate in any religious/spiritual path? In addition to individual therapy sessions, have you joined any support groups (for amputees or otherwise)? Are you in the US or some other part of the world?

I'm glad you found our forum. Please feel free to review existing threads and contribute if you wish. And you're always welcome to ask questions. As I'm sure you know, hemicorporectomies are extremely rare, and you're the first one I'm aware of to join this forum.

Helen

From Wikipedia: Hemicorporectomy is a radical surgery in which the body below the waist is amputated, transecting the lumbar spine. This removes the legs, the genitalia (internal and external), urinary system, pelvic bones, anus, and rectum.

[stonecutter]

Hi there Duane. I'm sure everyone will say that we are pleased that you happened along our forum. It sounds like you've been through a lot. Before you get into the body of this post, please note that I am in no way a medical professional - I'm a project manager in Alberta, Canada. The suggestions I make are solely borne out of my own experience and I recognize that no two people's experiences are the same.

I've not met a hemicorporectomy amputee before and honestly I didn't know what that was until I googled it. I've never met anyone like you in person however I am very glad to meet you, virtually, here.

Although some of the things you've referenced are familiar to me (dreaming that your body is whole), having the feeling that you are on the outside looking in while you, and the people around you are getting used to your new reality, I can't fully relate to the extent of how you must be feeling.

Not sure where you're writing in from, but I wonder if there are resources you can tap into to help you through times when you feel this way? Alternatively, is there any sort of rehabilitation hospital you can involve yourself with - not necessarily as a patient but as a resource? The reason I say this is because as someone who has been through a lot, you might find it therapeutic for your own outlook if you avail yourself as someone who can provide counsel to others who are going through tremendous life-altering injuries / surgeries. Also, by immersing yourself into the community, you might find some common ground in order to make new acquaintances and friends.

Given the differences in our respective conditions, my story might sound trivial but I hope you can take a couple morsels from it to apply to your situation. After my accident I found myself in an acute care orthopedic wing of a hospital where I was the youngest patient at 19 years old among a contingent of senior citizens having hip and knee replacements, and if there was an amputee, they were usually in their 80s or 90s and it was the result of diabetic injuries. I couldn't relate and was having a tremendous time in my own head trying to imagine how to live a life without being whole. After the acute care facility could do what they could (mostly resolve the major infection I had) I was sent to a local rehabilitation hospital for the rest of my time while I needed to be in a hospital. Moving to that rehab hospital was the best thing that could have happened in my life as a new amputee. I was spiraling downward emotionally and mentally. But by going to this hospital I was placed in a ward with other patients who were either in a similar situation or much worse off. And the much worse off guys and gals really opened my eyes and changed the way I saw myself and my potential for life.

For example, there was an elderly gentleman named Ross who was a bilateral leg amputee. His attitude was remarkable. He had lost one leg years prior and was "now back to get the other trimmed to match!" Listening to how he described his life even as a 92 year old was an inspiration.

Another gentleman (can't remember his name) was only 2 or 3 years older than me. He was a heavy equipment operator who had fallen between the body of a bulldozer and the tracks while it was moving. This meant for him, he'd lost his leg at the hip socket and his arm at the shoulder blade. He'd suffered a tremendous amount of injury to his torso as well. He'd been in the hospital for months and was just about to be getting out.

What I learned from these two gentlemen was that as they had some time to learn what life is going to be like for them with their new 'configuration' they learned that life was livable. As they were "worse off" than me, it served to change my own outlook.

You could be that guy who becomes an inspiration to the rest of us. AND... you may find inspiration of your own by doing so as well.

Please understand that I am responding to the limited information provided in your opening post and not implying anything (as I don't know...) but one needs to be careful when they're finding it difficult to relate to others not to isolate themselves. Doing so might make the situation worse. Is your consellor on the right track?  Is it denial or is it difficulty learning to live again?

I hope you stick around and tell us more. This forum gets busy at times and slow in others. Not sure exactly what drives that, but we are here for you.

[leftyeric]

Hi, Duane,
Welcome to the forum. Congratulations on a physical recovery which sounds nothing
short of miraculous. I think most of us here on the forum get that physical recovery is
only part of what it's about.
Your sense of being on the outside in the cold, what a vivid image, and it sounds really hard. I'm
glad you've sought therapy. At different stages in your recovery, different therapists might be right for
you, and whoever helped you get through the intensive physical rehab might not be just exactly who you need now.
Obviously though, none of us here on the forum can really know what's best for you.

By the way, it was long time before my dream-body caught up with the reality of my real-body. As Helen said, that's completely standard. Actually fifteen years after my amputation, my dreams are about half-and-half, sometimes with
and sometimes without all my limbs. I'm pretty sure that doesn't make me half in denial!
Wishing you success in your process towards recovery,
Eric

[duanefox]

You say: "Please understand that I am responding to the limited information provided in your opening post and not implying anything (as I don't know...) but one needs to be careful when they're finding it difficult to relate to others not to isolate themselves. Doing so might make the situation worse. Is your consellor on the right track? Is it denial or is ...."

What else would you like to know? It's hard to evaluate what's important and appropriate. I'll be open about it all

[stonecutter]

What I meant by that is to ask if you feel that the counselor is right that you are in denial? Or is it more of a case of you are feeling like you're on the outside of life looking in because there aren't a lot of tools for someone who has been what you've been through to reintegrate into life?

My experience is limited, as from all outward appearances generally, people don't realize I walk with a prosthetic, but I did notice that half the battle of reintegration in to a life of normalcy was myself having to help the people around me accept my new reality and not have it front and center every time they saw me.

I suspect the reality is that you will find that harder, given the level of change through which you've persevered.

[duanefox]

Yes, good point. Maybe I'm at the end stage, acceptance and not at the beginning one of denial. It may well be that I'm now all that I can be, and that I ought to admit this.

Yet I still have the >desire< if not the >ability< to love and be loved. I still remember how it felt to be whole

Probably the best I will do is to forget how it felt before and just do the best I can