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Have you ever had questions about amputee life but were afraid to ask? This is your chance to get those answers. Not only that, but it’s a great resource and help for amputees and their family members. I’m sure you’ve had questions if you see someone who is living with amputation. So let’s see if I can shed some light on the topic.
I’ve compiled a list of the most commonly asked questions asked of me and others in the amputee community. If you have more questions that I haven’t covered, feel free and leave your question in the comments. You can also access the Prosthetic FAQs for the New Amputee sheet which is a great resource.
Common questions for those who are living with amputation
How did you lose your limbs?
From my experience, the three most common causes of amputations are due to a military accident, diabetes or illness. In my case, I contracted a flesh-eating bacteria called necrotizing fasciitis. This particular bacteria affected my major organs and my body started to shut down and I went into sepsis. In order to save my life, the doctors had to amputate my hands and feet. Read all about me, for the rest of the story.
How did you learn to adapt to your new life?
Obviously, life without hands and feet is unusual and difficult. I had a great team of therapists and my prosthetist, who created all of my prosthetics. Through their expertise, I learned the basics. However, once I got home from the hospital and back into my life I had to figure things out even further. It is mostly all trial and error when it comes to making things work. But mostly, if I had a need, like how to type on my phone, my family and I created a way to make that happen. For typing, I use a stylus strapped to my wrist. This is my favorite tool and I use my stylus for practically everything. For some of my prosthetic tools read The Honest Truth About Living with Amputations.
I’ve read about phantom pain, does everyone experience this? Does medicine help?
I can’t honestly tell you that every amputee experiences phantom pain. Although when you’re living with amputation, I think that it’s a fairly common occurrence. Phantom pain occurs in the amputated limb. For me, when they removed my hands and feet they sealed off my blood vessels and nerves. That forces your nerves to rewire. In many cases, you can still feel pain in a limb that is no longer there.
I can still feel my ankles when my legs get tired and I can literally feel the movement of all ten of my fingers. I can move each finger individually even though they are no longer there. But phantom pain is different. Amputee phantom pain is a pain in the part of the amputated limb that is gone. In my case, it feels as if either my foot or a toe is being hit repeatedly with a hammer. It’s extremely painful and an opioid medication is always necessary. The pain will continue for the two hours it takes for that medication to work into my bloodstream. But then it’s gone just as fast as it comes on. My post, How Phantom Pain can Ruin Your Day goes into further detail.
Do people stare and does that make you feel uncomfortable?
It’s very uncomfortable for me when people stare because I feel like I’m a sideshow in the circus. I don’t mind the children, because yes, I’m different than they are and they usually have questions. When our local preschool had a discussion about people with disabilities, my friend, the preschool owner, asked if I would come in and sit down with the kids. Check out How I Played the 20 Questions Game with Really Curious Kids to get a feel for the types of questions they asked. The kids were honest and loving and I have been back to see them again.
Adults, however, can be extremely rude. They stare, they give me pitiful looks, they tsk their tongues and they look disgusted with me at times. However, I don’t mind the adults who come right up to me and start asking questions. I never mind answering “how did it happen” questions. Most of the time they tell me how inspiring I am and I really do hope that I’ve impacted them when I’m out in public shopping for groceries or walking with my husband. I want others to look at me and think, “well, if she can do that, I certainly can do this.” I’m just not a fan of people telling me that their problems don’t seem quite so bad, compared to when they look at me. Yes, they actually say that.
Do you feel as if your goals or dreams in life have been ruined?
Not at all. Of course, there are things that I cannot do any longer, like travel alone or hike. My biggest sadness is the thought that I cannot help care for future grandchildren when they’re babies. I always figured that I could help out if my kids need me, but without hands, I don’t see that as an option. I’m just going to have to bond with them in other ways. I am not in that situation now, so I know that it’s no use brooding over it.
As for other goals, I’ve just created new ones. I never thought that I would have a blog and share my story, but I do. It keeps me busy and provides a way to help others.
Have you got the running feet like they have in the Olympics?
No, those are called cheetah legs and without plans to run or jump, I don’t need that type of prosthetic.
What was the most helpful thing people have said or offered to help you with?
People offer to help me do things all the time. I believe it’s because they don’t realize how capable that I am. I think the most helpful things are offers to cook a meal or clean my house. I’m really limited in those areas. So even though we hate to ask, with my husband’s busy work schedule, it’s a huge help when we get those offers.
What things bug you?
What really bugs me about living with amputation is knowing that I cannot do certain things. If a family member or friend needs help, I realize that I’m not the one to call. That hurts. I can’t cook a meal for a friend in need or run errands for them. It also bugs me that I’m the one who usually needs help in those areas. My husband works long hours so I really hate that I have to wait for him to grocery shop, run errands, cook dinner or shower. He doesn’t mind. But for tasks that I’m typically supposed to take care of as a homemaker, it breaks my heart that he has to do it all, when he already works so hard.
How do you use the computer or phone while living with amputation? How do you manage your blog?
This is where my stylus comes into play. In The Honest Truth about Living with Amputations, you’ll see pictures of my phone and stylus setup. Basically 95% of my blogging is done on my cell phone. I use Google Docs for writing. I create my images through Canva and I do all my social media on my phone. It’s only when it comes time to format and publish, do I break out my Chromebook, which is an awesome laptop and it serves my every blogging purpose.
How did you pay for your illness and amputations, and for living as an amputee?
My husband has really good insurance through his employer. Our friends and family also really pulled together. There were fundraisers and people really chipped in. In The Kindness of Others: Restoring Faith in Humanity, you’ll be able to see the love and generosity of so many people. It never ceases to amaze me when people step out in kindness. Whether it’s prayer, food, money or products that our family needs, people truly show their kindness. It’s for that reason, I want to spread good will to others. Not only because I want to pay it forward, but because I want to be a good steward of the blessings given to us by God.
Have you ever tried prosthetic arms?
Yes, I have. I actually have two sets. My myoelectric arms, work by the muscles in your arms. I also have hooks. But I don’t wear any arms because they just don’t serve any purpose. The hands open and close, but that’s pretty much it. I can actually do more without prosthetic arms, than I can do with them on.
Are the physical challenges harder than the mental?
I think it’s harder mentally. It’s completely frustrating to be at the mercy of someone else. I may have to wait for someone else to get something done. I have learned How to Unlock Patience and Grace by Waiting for Others. Many times they do things differently than I do, which can be frustrating. I also think it’s mentally harder for my loved ones too. The other day I was struggling with something. That can be hard to watch. Sometimes, they will just do it for me when that happens and that’s frustrating for everybody.
I know that I’ve just scratched the surface of the questions that you have about living with amputation. I really am an open book. So if I’ve missed something, please let me know. This is definitely not a life I would wish on anyone. However, I’ve grown as a person and I’ve grown in my relationship with the Lord. That’s an unexpected blessing in itself.
There have been so many blessings in my life as a result of living with amputation. There have also been a lot of laughter and tears. What I do know is that everyone has challenges in their lives. The best way to cope is to seek guidance from the Lord. Follow Him and praise Him for all of your challenges and He will see you through.