When I became an amputee I was given plenty of pamphlets on what to expect. I knew about phantom pain and that I would need to relearn how to walk. I even had a basic idea about what prosthetics were available at the time. But there were numerous things I was never told (or never listened to, I WAS a teenager at the time). Here are some of the things I wish I knew from the start:
- Confidence goes a long way. For one, you need confidence in yourself and your prosthetic to be able to walk, run, climb, dance, etc. But the most important thing that confidence does is throw away the worries and doubts about others opinions. You may still be limping, but you embrace it so that it’s not as big a deal to YOU. This isn’t something that happens overnight, but over time.
- People are staring because they are curious. I used to be bothered by people staring at me, I felt like a freak and like I was being judged. Over time, I learned that most people are simply curious. For one, prosthetics are pretty cool looking (even cooler looking with a UNYQ prosthetic cover!) and a lot of people have never seen them before out in the wild. If someone stares, try to keep that in mind.
- There are plenty of weirdos out there. Devotees fetishize amputations and there seems to be a crew of them that prowl amputees on social media. NO ONE seems to tell new amputees about these folks or how to deal with them. The “ignore and/or block” method has been very helpful for me, along with locking down social media so only people I personally know are connected as friends.
The Amputee Coalition Conference is one of my favorite events of the year. I love getting to hang out with friends and make new ones!
- Your prosthetist can be your biggest supporter or your biggest obstacle. My first prosthetist was a nice guy overall, but he did not listen and was not interested in trying new things. When I realized my prosthetic was not helping me progress and wanted to try something new, he was against the idea. Ultimately I switched to another prosthetist who was willing to try new things and I still see him 15 years later. He’s even the one that looked into UNYQ’s covers when I requested more information. A great prosthetist is priceless!
- Peer support is worth its weight in gold. When I lost my leg I felt like the only teenager in the world with a prosthetic. Luckily, I was able to attend the Amputee Coalition youth camp where I met other kids and teens with amputations. We pushed each other to try new things, shared funny stories, and provided helpful tips. Later in life I met others through my prosthetist and physical therapist and recently started going back to amputee conferences. Being around other amputees helps you realize you are not alone, and often they will help you realize your full potential.
- Look at as many inspiring stories as you want, but put it away if it starts to make you feel bad. Really this piece of advice can apply to all individuals, but I think even more so for amputees. As a teen I was bombarded with pictures and stories about adaptive athletes, who are incredible, but it made me feel a bit inadequate because I was never an athlete. Active, yes, athlete, no. While it is great to read inspiring stories about amazing people what is most important is to realize it is ok to be YOU.
- You don’t have to be an athlete to be active. Get out there and walk around! Dance in your living room! Flail your arms like an inflatable tube man! Anything that gets your blood pumping is going to improve your well-being. I even recently tried out Adaptive CrossFit at the 2016 Amputee Coalition National Conference!
Being active is important to me. Hiking (and taking time to enjoy the view) is one of my favorite activities!
- Carry extra supplies. Sometimes all you need to do when something feels weird is take your limb off, and more than likely you’re going to want to put it back on! If you use liquid or lotion type items most can be kept in a travel size container. For air travel I always keep vital leg gear in my personal bag to avoid worry about lost items.
- Leg farts are hilarious. I’m not kidding. Every time I put my leg on a little bit of trapped air needs to get out of the socket. This inevitably results in what I fondly call a “leg fart.” They are absolutely hilarious. Anyone who tells you differently is a liar and hates fun.
The road to recovery is long and hard, but it certainly is not impossible. My journey has been possible because I believe in myself, surround myself with supportive people and have learned a few tricks along the way. If you’re a new amputee, feel free to ask questions here and if you have advice, please contribute!
Hey Erin…..this is a great article and a wonderful way to embrace life as an amputee! I was at the last ACA conference in Greensboro and thoroughly enjoyed it. I brought 2 patients to experience a conference that was more amputees than abled bodied folks. Anyways, I would love to copy this article and share it with all my new patients as well as existing amputee patients if that’s ok with you! Thanks and I hope to see you at a future ACA meeting.
Hi Rob, thanks for stopping by our blog and for the kind words about Erin’s article — feel free to share it with your patients! -Evy from UNYQ
<3
I know you…
I am a brand new amputee that hasn’t even gotten my first leg yet. Thank you for posting this, these are all things that I am experiencing now. Especially being embarrassed and being starred at. I just want to blend in but I don’t think that will happen without a leg.
Thank you so much, by you putting this, it tells me that everything I am going through is normal.
PS I am not a creep; I don’t think anyways and don’t want anything, but to say thank you !! :)
From a 50yo, 25 year right AK amputee-
DON’T worry about what people think or how much they stare at you. Just learn to see yourself as a rockstar and they just want to be close to you and ask questions- Be ready for questions and be kind with your answers. You can choose to rock their world or help shape it- It depends on where your head is with your situation.
Try to help shape their world more than rock it- trust me… Peace-
Hi Andrew — So glad Erin’s article resonated with you! -Evy from UNYQ
Great thoughts. I’m learning as I go. I especially appreciated not letting others’ accomplishments make you feel inferior. I believe I’ll get there eventually. Love my peer support!
I’m not an amputee, my sister is, but I have to tell you how much knowledge, suggestions and yes, even joy & laughter I get from your site and others. Thank you for being there.
This list should be mandatory reading for ALL anputees. Excellent, spot-on advice!!!!!!
Thank you Susan! Erin did such a great job on this post.
Great article. Come join the LIMBitless Community. http://www.Limbitlesslife.org
I love this!
My dad is or will soon be a double amputee. He is eighty-five.
My brother also recently underwent amputation. He had fallen is was discovered he has Diabetes. I am ever so proud of both my dad and my brother.
A funny story. After waiting foe his first prosthetic leg for ALMOST a year my dad finally got his. He was doing really well except he needed help putting it on and taking it off. He has Dementia…While it can also be heart-breaking my Dad has taken it all in “Stride”…While out for his early morning hour long walk, doesn’t he break his good leg. That’s why he may need the second amputation. I believe it won’t faze him a bit.
All of these are true! As a 2 year above the knee amputee, all of your points are valid. Glad you have your blog out there for others to see, learn from, and figure out that if you pay more attention to the humerous side of being an amputee, you will probably do well in recovery. :-)
Thankyou, I’m a new amputee, Right below knee. you shared alot of info. I returned back to work, due to no money and social security taking there time. I learned alot so far, but your info helped alot.
The one that resonated with me was about athletes. I’ve quoted the same exact line many times before. Many well-meaning people have held up examples of athletes performing extraordinary feats hoping to inspire me, only to have the opposite effect. I finally learned perspective, and began to ask them if they are achieving the same level of performance with their able body. On top of it all, I was diagnosed with multiple brain injuries received during the same wreck that tore my leg from me, so even walking well wasn’t in my future.
My biggest lesson was to learn to shut off all the do-gooders with the empty “you can achieve anything” type comments, unless they also come with an action plan and are willing to commit with me.
Hello, how are you doing
my name is Janice am amputee. For 3yrs ,but it feels like yesterday. I gotten so sick after amputation. Every thing went crazy to me .Lot my leg and mine at the same time. I lost weight crazy so the leg they fitted didn’t fit anymore. Went to Hanger the guy was not helpful. I told him it didn’t fit he told me it did. But it’s my leg I know its your pants, so I left been in my wheel chair ever since sitting on side of my bed. I haven’t really moved since then. No friends or help only from my youngest son, but am sure that he’s tired of me . I love him sorry for grammar don’t beat me up for it that’s why I don’t share
Janice, Don’t give up !! I had a similar experience with them… Changed to a new company and went from a few hours a weeks to NON – STOP.. Find the right Prosthetist and start LIVING your life again !!!
Leg carts are hilarious! It alwayso happens to me when I walk up to the register at a store , I always blame it on my son. He gets embarrassed and says, “dad!”
I tell myself there are many things I wish I knew ahead of time; lessons learned the hard way or heapin’ helpings of bad news whose delivery I swear I would have managed differently, were I on the dispensing end rather than the blind-sided recipient. Then I realize that’s bull. What, in 56 years of living, could possibly have prepared me for the immediate and unsuspected loss of my left leg from mid-thigh, down? NOTHING! There is no “this could happen to you” foreshadowing or disaster preparedness class like those we take for CPR, first aid or readiness for financially hard times. Amputation is not a procedure that’s scheduled in advance so even if there were any sort of tutorials available, it’s not information one would digest unnecessarily much the same as you wouldn’t learn braile unless and until you went blind. Because amputation is either TOTALLY NECESSARY or something you’ll never have to deal with at all, thoughts of it and helpful information about it live alongside coping with the death of your chilld and other wholly unsavory, statistically improbable possibilities. Its a set of circumstances you just find yourself in. If the ER surgeons had prefaced the procedure with: “Okay, before we begin there are a few things you should know. Nothing is ever going to be the same. Nothing. Ever. You will need to re-learn how to stand up, sit down, walk, cook, bathe, sleep, exercise and relax. It will be months before you will be able to consider doing any of these things without assistance from others. Your lifestyle, self image and the quality of life itself will all undergo drastic changes and must be completely reconstructed, perhaps even multiple times. An addiction to pain killers is nearly guaranteed and some aspect of your loss will be the last thing you think about at night and the first element of your awareness when you awake.” But there is no such talk and the future holds no guarantees of success and limitless opportunities to fail and be defeated. If I had known all THAT ahead of time, I probably would have said “no.”
I was wondering if it would be alright if I shared this post on my blog?
I am an amputee who likes to share my own and others travel adventures.
Hi Bill, Of course! We would love for you to share our post, however, we would ask if you please give credit to UNYQ!
Well written… Yes I’m also an amputee (LTK) since 2005 and I’m out there. It’s also got to do with mindset. Greetings from swellendam, South Africa
HI Erin
i am bk of 30 yrs and in all this time you are the only one who i have heard call them leg farts.i started calling them that 20 years ago when the first alpha liners came out.also i would like to also say that one of the things that i wish they would have told me the inevitable depression crash.we are hyped up by doctors and family members about how great we are gonna be and this won’t stop us and the new technology and how we try so hard to live up to all that and then one day it all comes down the depression the suicidal thoughts.i wish someone had told me now when i talk to new amputees i tell all the great stuff but i also let them know to be aware of those feelings and seek help.10 years down a dark road alone before i got help.not trying to be all gloomy but it is a very real thing for amputees .thanks jim
Hi Erin, your post really hit me. I’ve had my leg for two years now. Had many set backs and the depression from all the build up really has hit me hard. I just now got the leg finallybfitting right and mgg prosthesis has been awesome. I have severe back issues and autoimmune diseases that real havoc on my general wellbeing. I hav e ju st about given up on being able to function in this leg. At this point I’m using two arm crutches to get around and would just soon use my wheelchair than the leg. Then, I put the leg on and think how awesome it would be to be able to walk. It’s just very hard and nobody understands. I get the OTHER PEOPLE DO IT, YOU SEE ATHLETES RUNNING AND JUMPING E TC… I’m almost 60 and will never run. I feel like 30 down deep inside but just can’t seem to bring it to the surface. This is the first time I have seen your blog and it brought some hope to my mind. Thank you. I will continue to follow.
I’m lost… 2.5 years ago I lost my left leg and January 23, 2020 I lost my right, both below knee.. I have a prosthetic for the left but thanks to Corona virus holding up Medicare/Medicaid I’m living in a rolling walker I have no support and I just want to give up.
Incredible points. Sound arguments. Keep up the great spirit.