I thought this might be of interest to some. I had a very rare operation in May 2011. It is called a Hemicorporectomy. ALL of my body from about an inch bellow belly button was cut off to save my life. i have a site at hemicorporectomy.org and this is a link to a news story they done. I am working on getting a team together so I can stand,walk and wear normal clothes again.
Angel's Story - YouTube
Welcome to the SDMB, and thank you for sharing this. I’ve read the Wiki page on hemicorporectomy quite a while ago, and found it fascinating ( Hemicorporectomy - Wikipedia )
There had been a link from that article to a blog by someone who said that they had undergone the procedure, but others questioned whether it was real or not. (see the Discussion page on Wiki) Your username matches the the name on the YouTube video for an identified person with an active blog, so I’m sure you’re the real deal. By the way, you might want to link to the blog: http://hemicorporectomy.org/my-blog
If your genitals are gone, do you still have sexual thoughts/feelings?
That was fascinating and not something I’d seen before. The youtube comments are interesting (and thankfully mostly positive, as far as I could see), but it must be weird to have to refute rumors of your death.
If I can ask a question, how is your son doing with all this? He seemed really supportive in the video, but having lost my own father not quite a month ago, I’m sure it’s been an emotional time just worrying about you and hoping for the best.
Thank you for sharing your story!
What was the disease/trauma that required this extreme measure? When I looked on your blog for information under “Medical” the longest section was a write up regarding the BDSM lifestyle.
So… is this the offical “Ask a hemicoporectomy patient…” thread?
I had heard of the surgery, but wasn’t aware of any living folks currently. Wow, that’s a tough row to hoe and good for you for being such a survivor. I like that you don’t hide the suck and side effects - too often these news stories turn into sugar-coated “oh, isn’t that wonderful!” sorts of things and the reality of being disabled is that there is much suckage, even if said person is glad to be alive and finds much joy in living.
I hope things improve for you as time goes on. I wish I could kick a few bucks your way, but I just don’t have anything right now. Wish we could paint your van for you, too, but we’re a little far from Kentucky right now and don’t have the bucks to spring for the proper paint, even if we do have a kick-ass airbrush.
I was just wondering - want is the one thing in your life right now that could make the biggest positive change for you? What do YOU feel you need the most right now? Could be anything, from trivial to major.
Wow, you seem to be an amazingly resilient person.
You definitely haven’t had an easy life, but it sounds like you’re coping with it all better than a lot of people would.
The youtube video explains this. Angel is described as a paraplegic since the age of 2 who developed a pressure sore that got badly infected down to the bone.
Angel, what caused your condition at the age of 2? What adaptations can be made to enable you to be safely restrained into a vehicle for better transportation?
Thank you for sharing your inspiring story.
Can I hazard the guess that spina bifida is most often the condition that would require this procedure? Especially, in the case of a person paraplegic at the age of 2?
Angel, it is nice to have you join us, and your situation is certainly interesting to many in addition to being whatever problem it is. If you are willing to share a bit about it, that is most appreciated!
Good luck!
I also invite Angel to stop in at any other thread that captures her interest as she is, of course, much more than just her disability and (almost) unique amputation. I noted from her blog that she plays WoW - please, Angel, do step into the New WoW General Discussion Thread sometime.
Fascinating! Very impressed by your attitude as expressed in the clip. It looks as though you have an excellent support system with family and friends. Best of luck!
Thank you. I was doing some fancy fast phone flipping at the time. 
Welcome to the Dope, Angel1366.
Thanks for all the replies I will try to answer some of the questions. At age 2 I just stopped being able to stand. No One could really give me a reason. I was a Partial T5 Para. I have 3 grown kids Only one still at home with me. I got many pressure sores over those years . For 6 years I did not have any but the damage had already been done,. Inside my bones were being eat away. By the time we found out this operation was my own opinion to live. Yes I have bad days. Sometimes I really still lose it and brake down in tears begging to wake up and this not be true. Then I pull myself together and go on another day. Some days I take one day at a time but other days I take an hour at a time and rare days one minute at a time. But at least I am alive to have these types of days. I am working very hard to get a team together to make me a new bottom of me to walk.
Yes I still have sexual feelings and thoughts and yes some nights I cry my eyes out because the feelings are so strong and nothing I can do about them.
I live in New York now. My two other kids are in Kentucky.
One asked what would help me. well I have many dreams. But I would love to find clothes where I still looked good and felt sexy. Tired of tee shirts. My other thing I am working on is going to see Jeff Dunham. He made my life easier when I was going through all of this. I wrote him and told him this.
I look forward to getting to know you all and join other talks.
I love to write and have two books I am working on. I have some poems not sure if is a place here for things like that.
And thanks for thinking of me about your air brush skills, I want to do it in pastel colors with hemi girl down the side. So maybe you can give me some tips on what types of paint and questions I should ask when i do get the money to do this to be sure to pic the right place.
ok hugs all around.
Angel
My son is doing great. Yes this was hard on him but he uses humor to help him. And on my day of operation… Friends he never meet on WoW kept him busy and stayed with him via the game. Friends and family don’t always have to be right next door to help.
Wow, Angel1366. Just…wow. (Not WoW…of that I know nothing I tells ya - nothing!)
You don’t have courage and determination to live; you are those things.
Forget about wearing “normal clothes again” - start designing that Superhero ensemble simply because that is befitting of who you are.
You are truly amazing, and incredibly inspiring. You may be half the person you were, and still, you’re a thousand-fold more than I could *ever *be.
I hope your ‘down’ days are fleeting. Because you’re one helluva woman.
You are a very courageous lady. I can’t even imagine what it must be like. I get panicky at the smallest chest pain, to decide to amputate the lower part of your body…wow, that takes something I am pretty sure I will never have.
The video says that you will be looking for prostetic legs to walk again, has anyone figuered out how that will be done?
ETA: By “will be done” I mean how will the legs allow you to walk, as the entire lower body is gone.
You’ve mentioned this several times, and it’s obvious that it is important to you.
In the videos the shirts you’ve worn look pretty good to me, but of course this isn’t about MY perceptions, it’s about YOURS.
I’m wondering if we could harness some of the creativity and know-how of the SD to help you with this. Sort of a “Dress Hemigirl Sexy Project”. We have both crafters and fashion types out here. Surely we can come up with something.
The first step would be for you define what you consider “good-looking” and “sexy”. Maybe it’s a type of shirt. Maybe it’s fabric. Maybe it’s accessories. Maybe some of all of the above. I really want to help you with this. You’ve got “body image” issues like no one else I’ve ever met before, it seems that anything you can do to help you be more comfortable in the body you have would be a blessing.
I wouldn’t want to start such a thread without your consent/permission, though, since it’s such a personal issue for you. You’ve already mentioned your feelings about depending so heavily on others, I don’t want to inadvertently take more control from you even if my intentions are good.
I’ll ask my spouse about that, as he is the family expert. It may be a bit, though, as I just started a new job, our schedules aren’t in synch yet, and things are a bit hectic right now.
Wow, your story is so interesting, I love how the news story at times union describes your personality.
I’d be happy to help think of clothing ideas for you, but I agree that we could use some help with what YOU consider to be sexy and fun. What colors, fabrics, designs are you into? Feel free to link to images and maybe the other creative folks can come up with some designs for you!
I’m a knitter and a bit of a seamstress myself, so I’d be happy to help in any way. I personally love making fingerless gloves, if you want a pair I’d be happy to knit up something funky for you!
That was a fascinating and inspiring video. It sounds like you have an exceptional medical team as well as a wonderful partner and son to help you through this. I love the commitment you have to reaching out to others who are going through the same thing.
An incredible story, Angel. It’s an honor to have you here, and I hope you stay and share your experiences for a long, long time.