The Toughest Thing After Amputation is NOT What You'd Expect! [CC]
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- เผยแพร่เมื่อ 6 มี.ค. 2022
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Adjusting to life without a limb had a learning curve like nothing else I've ever experienced! Here are the top 5 things I struggled with while adapting to a new body!
Learning to Walk: • What “Learning to Walk...
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MY STORY //
Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel has documented my journey adjusting to life with a visible disability as an amputee, and continues to be a haven to discuss physical and mental health!
MY PROSTHETIC LEG:
I use the Ossur ProFlex XC Torsion foot/ankle with a direct socket with passive vaccum suction.
MY AMPUTATION STORY:
Why Did I Lose My Leg? • HOW I BECAME AN AMPUTE...
How I Said Goodbye To My Leg: • COME WITH ME ON A GOOD...
Seeing My Amputated Leg for the First Time: • Seeing my amputated le...
Day in the Life of an Amputee: • A Day in the Life of a...
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DIOS te bendiga siempre animo y saludo s
So the correct answer to the community question is....
4) None of above. 🙂 🥂
Jo have you heard of Mischief on the trail? He's a bilateral amputee hiking the Appalachian trail from Georgia to Maine.
I was in London with my family when I was 7 years old. My foot broke in the hotel, luckily it was only a minor thing that fell out
In an ideal world being an amputee would be the least interesting thing about you. Just as nobody cares if I wear hearing aids or have had several gruesome eye surgeries, people ought to see your prosthesis and just... shrug. I agree completely that you don't have to do jack shit, I'm stealing that line and filing off the serial numbers.
Your phrase "acceptably disabled" hit exactly on what I've been struggling to talk about in my own journey. Thank you for continuing to share yours with us.
It hits with me too, but for me it's that I'm "acceptably chronically ill". I have two chronic illnesses that were massively interfering when they first started, but now they're (mostly) well controlled with medication, so I can present as if I don't have a chronic illness even though they'll always be there. My wife also has a chronic illness, but it's less well controlled and it's much more interfering with her life, so she doesn't have the luxury of appearing "normal". Shitty people might judge her based on that since she doesn't have a typical 9 to 5 kind of job and she often can't do the things that she wants to do
Hits home with me too as an autistic person who often gets read as NT.
@@Birdkiller46 I'm don't know what "NT" means. Would you let me know? Thanks.
It hit me because I am epileptic; I have random tonic-clonic seizures. I wanted to research robotics and go into prosthetics, so whenever I see them I have to resist the urge to find out how it works. Yea, I can walk around normally, but waking up to a crew of first responders multiple times and a hangover-like feeling is never fun.
@@melissafields3376 it means neurotypical :)
"socially acceptable disabled" is sadly very true. And I have to admit that I was one of those who differentiated a lot as a child, because I never had problems with people being blind, deaf, wheelchaired, etc. but of mentally disabled people I was plain scared. I just didn't know how to interact with them. Until I learned that my nephews of second degree all are autistic and I realized that what I perceived as mental disability was actually nothing to be afraid of. That actually, the psycho killer was a myth and not reality. After high school, I worked in a psychic ward for a year and I finally realized that just because people need a bit more help sometimes, it doesn't mean that they can do nothing, it doesn't mean that they can't live meaningful lives.
i am disablled, i get people that just look at me?
I have family and friends, as soon as i became disablled they jumped ship... no longer contact, as i would be a Burden on their life...
I would interupt their Rich Life...
I have a blood disorder that, killed my mum at, 39, my brother 46, and my sister 39, i am 61, and people are scared to be around me...
@@graemejohnson9025 Dang... I feel that, but there are people out there who will see your worth and love and accept you just like anyone else ♥️
@@graemejohnson9025 why are people scared to be around you? I'm only asking because that's what I thought too. That when people close to me just as you said "jumped ship" I believed they were scared of me. I found out later that it was because they're afraid of thinking about they're own demise. Still not a great comfort but ... it is what it is; at least that's how I look at it.
@@melissafields3376 I find it, the oh crap do they have to help me do something..
People are embarrassed to be around disabled people..
With the new pc crap, don't want to be rude..
The mother of my Downs syndrome nephew, was embarrassed to take him shopping when he was 4 years old.. because his tongue poked out..
I would just take him shopping, and when his tongue poked out, I would do the popping sound with my tongue, he would mimic me.. I have neighbour, famous world wide.. he and his wife just treats me as a normal person.. if I need a hand, just ask...
@@graemejohnson9025 thanks for replying and I appreciate your candor 🙂
I love the discussion on being "acceptably disabled". I have chronic illnesses which are technically qualified as disabilities. Not "looking sick", and not wanting to, but needing compassion, empathy, and help from family members, friends, and even strangers at times is incredibly frustrating. I went for so long not even thinking I was worthy of help, I still don't often even acknowledge my struggles to others. My husband and I recently got into a huge argument and what it boiled down to was me feeling like he didn't care how I felt and him genuinely not knowing that I was even struggling because I just didn't talk about it. I have basically made myself outwardly "normal" to the point that some people don't even believe me when I say "yeah I can't do that.. no like I literally CAN'T." I am not what someone imagines when they think of a person with a disability, and that's okay, but I deserve the help and accommodations that make my life easier, regardless of whether I can scrape by without them.
I have been the same. I've been trying to carry on with things and then unfortunately bark at my husband, when he has absolutely no idea what's going on. How to help, what I'm feeling, how fatigued or in pain I am in. In my opinion, perhaps I have not wanted people to see my disability as I haven't accepted it fully, I don't want to appear vulnerable or weak as I have always been strong, independent and truth be told, very stubborn women. Time for me to open up.
I agree, as a disabled Veteran, you learn quickly that you are not "differently abled". You are disabled, it's not like you lose a function of your body, brain, or mental health and something miraculously becomes better. However, you have to learn to do things differently like I lost the use of my left hand, two years to train my nerves to tie shoes again, but my right hand didn't become super human. Being accepted with disabilities is not common.
I landed myself in the hospital with a badly broken leg last week and now I'm in a rehabilitation center for three months. Today in my first day of physical therapy I met a man who is an amputee. He seemed pretty friendly and open so I recommended your channel. I know my time in rehab is limited and I'll walk away from this with 2 legs but I still find you to be an encouragement. All your video shorts about balancing are helpful. I'm at 10 days out and have been able to hop to the bathroom a couple times with a walker and transfer walker to wheelchair as needed. I know it is a very different situation from yours but thank you for teaching a 330lb 50yo woman to hop and to hope.
Best of luck in your recovery. I struggled with a knee replacement a couple years back. Remember the old cliche, The light at the end of the tunnel is NOT the train… 👍🏻
I had a R bka in Aug '23 due to an ininfection. Doing ok in a wheelchair. My hubs & friends help me a lot. My state has restricted my driver's license so I can't drive. It's funny, I won't be driving with my R foot but they are still requiring me to take another road test to prove i can drive again.
I know some people complain about others staring. Honestly, in 4+ years I've never noticed someone staring. Maybe it's just that I don't care about the opinions of strangers. I do notice kids though. And I don't ever mind showing it to kids and answering questions. For kids, I tell them that my leg didn't work any more so the doctors gave me a really cool, really strong leg. I'm still learning to use it right, so in the meantime they gave me a great chair with wheels to get around. Kids are great and get over it fast.
The doctor told me that I had the choice to either amputate or die. The decision took about 30 seconds. I've been an amputee for over a year now, and am undergoing much of what you're talking about now. Prosthetic fit had limited me from getting around as much as I want due to pain from blisters and irritation., Fitting the socket has been ongoing, and I'm progressing. I sold my manual transmission Mini Cooper in favor for an automatic Honda civic, so driving is no problem. My neighbor is still pi$$ed off at me because I wouldn't sell her loser adult son my 6 speed pick up truck. Walking with a cane and also driving the truck with a clutch were 2 goals I've already met. I'm still limiting my prosthetic leg wear to a few hours per day, but can get out to some restaurants and light shopping.
Your videos remain inspiration for me and give me a better understanding of living and functioning with a prosthetic leg.
Because of you, I know about the I-Walk, since doctors and rehab didn't know anything about it & it gets me thru the occasional bad days without having to stay in bed waiting for pain to subside or healing to complete.
I'm an amputee too, although I had to beg to get my leg cut off. I feel you on the car thing- I had bought a Challenger R/T with the six speed manual pistol grip shifter only about six months before my foot gave out completely and I was in a wheelchair for another six months then amputated. Loved that car for the time I could drive it- lost my ass selling it. I also had a manual pick up that I traded for a nearly identical (even the color) one that had an automatic.
I don't wear my prosthetic all the time either. It's like crutches to me- I use it to get around but generally take it off or at least pop it loose when I sit for any length of time. So I wouldn't worry about the amount of time you have it on.
30 seconds is too long for such a decision.
My son was told basically the same news by the orthopedic oncologist just last week. Its his left leg. His daily driver is a 2001 Cobra, those things don't have slave cylinders and he's not sure if he will be able to drive it. How heavy is the clutch on your truck? Hiw long did it take for you to feel comfortable driving it in traffic on public roads with other cars and hazards around?
God bless
My surgeon said the same thing to me. " There's a good chance that you could die from the infection if we don't amputate". No decision to be made. I said ok, just do it.
10:30 omg, this brought me to tears. I’ve never been able to put this into words. The “you’re such an inspiration! I could never do what you do!” - I hate that expectation of me. I just want to be a person. I don’t look disabled but like... today I can’t get out of bed because my pain is so bad. The facade is exhausting. I grieve when I can’t do what I used to be able to. (Also, to end on a light note- I felt the “sorry for cussing dad” deep in my soul haha!)
As an autistic person who struggles to identify how I’m feeling- even with physical pain- I find your second point to extremely challenging. I would be interested to hear more about what types of new language did you have to learn to explain how you were feeling.
Two things:
1) (funny) When people ask about sexual intimacy, I’d be tempted to respond with “I’m missing a foot, not my . It’s not a big deal.”
2) (serious) I’ve watched many of your videos. And while the majority are amputation-based, I feel like the thoughts behind them are so applicable to situations like mine. I have Bipolar, Major Depression and Borderline Personality Disorder. (I especially loved the video you did on peoples comments on your depression). I also have some of the same issues you have, like the inspiration/pity attitudes of others and the questions others ask. Much like you are doing with your videos, I try to inform others about mental health issues. My goal is to help de-stigmatize mental health issues. And I think you can be inspirational without expectations that you’re going to be some Supergirl running marathons and stuff. I look at you as someone who has a lifelong disability (you aren’t planning on regrowing your leg, correct?) and yet you’ve adapted so you can continue your life on your turns. If that means running a marathon, great. If it means just going to Walmart to buy groceries, great. The thing is you’re living your life. And that can be inspiring to others.
I definitely had to re-read that because for a moment I thought that #1 was referring to foot fetishes and then thought....yes, even though I have both I'd say neither are my sexual organ of choice.
I'd be tempted to adapt #1 even further to "I'm missing a foot, not a kidney."
Just to add a bit of surreal confusion to their day.
@@Autoskip that’s evil. I approve.
@@Autoskip I like the way you think!
She actually has an older channel called Trauma Talk which you may like
What is seen in the media is certainly NOT representative of most amputees. As a retired scrub tech with over 40 years of experience in ORs, I can tell you that, outside of the military, the majority of amputations are the result of vascular compromise from diabetes, smoking or especially the combination of the two. These are older patients who do not heal well, often require progressively higher amputations, and have co-morbidities such as COPD, heart disease, and cognitive loss. For many of them, sadly, mobility means a wheelchair.
I have been dealing with the loss of "normal" due to severe PAD and DVT. This is an invisible disability and very limiting for someone who has been extremely active throughout my life. This sounds crazy, but
Sometimes, I think it would be easier to have a visible sign of my "limitation" that I struggle with the exact same issues you do as an amputee.
There are some days it just becomes overwhelming.
Thanks for your videos. I had a major surgery to fix the plumbing in my left leg on January 3rd and another one on February 4th due to some infection issues.
I found you several months ago when we weren't sure if they would be able to "save" my leg, and I wanted to prepare.
So far, there is some hope, but I have a long recovery and lots of PT.
Thanks again for being here and being real.
Best of luck in your journey. ❤
@@danielletdg8423 thank you
Youre not crazy, same here mental disabilities, mcs (aka stupid amount of chemical allergies im talking 30+), and hip bursitus, (TOO MANY LMAO) and almost all of them are invisible or unnoticable. People dont take my limitations seriously, they criticize me for em, or tell me to "get over it". Well let me see how to get over a chronic hip condition and allergies that require i avoid numerous things or else suffer chemical burns, hives, or death 👌 Most jobs get upset about it, i cant wash dishes cause im allergic to most soaps and itll cause me severe pain, i cant stand for 8 hours so they either yell at me into submission (causing pain) or hide me somewhere to not be seen cause I cant be seen sitting for a few minutes by customers (ugh), or straight up bullying me for ptsd 😂 Ahhh nah you aint crazy, its fairly reasonable. We wanna be taken seriously and not mocked, ridiculed, or not trusted for invisible yet real and tangible experiences... Even family accuse me of "being afraid of chemicals" and such, and i really have no fear in them, im just tired of chemical burns from soaps and im tired of hives and generally feeling bad. AND LET ME JUST MENTION THE SHEER AMOUNT OF PEOPLE (EVEN MY FAMILY) WHO REFUSE TO LET ME SAY I AM DISABLED "because im limiting myself and im not "TRUELY" disabled) Everybody in the world with that kind of ideology can go 🖕 themselves cause i am sick of their bs gaslighting ✨
UV light may also help.
@@wendylea1983 I feel you. I have fibro and ME (among other things), and having illnesses/disabilities that can't be quantified in tests is very hard. Lots of gaslighting from the medical profession doesn't help. A lot of people just don't believe you, as you know. It's horrible to live with.
I also get sick of people trying to suggest things to "help", and folk that don't listen when you tell them this is a lifelong thing.
I too hate the cognitive issues. I used to read books constantly and I can't now. I forget words too, and it makes me feel stupid.
I was a really fit/active person before this struck. I was a sports coach, and exercising 10hrs per week. I've spent my entire life being fit and healthy, and I just don't know what to do with my life when I'm stuck in bed 90% of the day. It's driving me insane!!
Thank you, for your video. I am ex British Soldier. I struggle most days, with the loss of my leg, and PTSD.Many have said it’s ok to have a bad day, and I try and get above that, but it was so refreshing to hear that you too have pain, you too have down days. Please keep putting out your clips, it helps me no end. X
I wear oxygen 24/7 now. Most people think the hard part was wearing it out in public because people will see you/judge you. But I always struggled wearing it around the house. Now, part of that was because my doctors were giving me bad advice and tying to tell me I was deconditioned, which was NOT the case, but in my mind, I'm still the same person I was before. I shouldn't need it to just go up/down the stairs. I shouldn't need it to XYZ. But oh the difference it makes!!!
And I hear you on the packing an extra suitcase thing. Portable oxygen concentrator, large concentrator depending on where I'm going and for how long, extra batteries, charging cords, etc.
I do think the hardest part has been mentally adapting to it. And I am by NO definition adapted to it yet!
If you want to watch a good TH-camr who often wears oxygen, I recommend GoodTimeswithScar. He mostly does videos on Minecraft but you usually see it in his other videos and livestreams.
I feel like seeing someone else wear oxygen normally, even if his situation is very different, might make you feel less alone in needing oxygen.
@@aleciastar1433 Thanks! I'll look him up!
I'm mentally disabled and seeing your experience as a physically disabled neurotypical is fascinating, it has given me a broader view of disability.
Yep. The fit thing is a HUGE issue. My Dad’s an above the knee amputee, and he’s been that way for 50 years. He’s at the prosthetist regularly for socket adjustments.
Oh damn I really felt that "acceptably disabled" shit. I'm new to the channel but boy howdy do some of the things you say really resonate
I find the grief the worse after 5yrs it's now stopped me from walking and put me in a very dark place. So many people expect you to do this and do that but don't want to put the time in to see when you accomplish something that is truly great for you. Or it's taking longer than they expect so they walk away. Am so grateful to have found your channel it's getting me through a little. 🙂
I love that your so honest, I had a stroke when I was 26 and it took me like 8 yrs and I’m still uncomfortable a lot of the times. I can’t use my right hand and I can walk but it’s not the same. I hate when people stare and I do the same thing when I’m going somewhere I plan out what I’m going to say lol
Now that's one situation I would never have envisioned needing an "elevator speech" for: the question "what happened?"
Haha right!? It sure helps!!
@@FootlessJo Thank you for that tip, I wish I had heard 40 years ago!
Thank you for ingorming us on this topic, i'm a student in physiotherapy. And sometimes it's hard, hard to find the words or to know what will be okay or not to do or touch when i'm interacting with patients. But especially on those psychological and emotional topics, sure i can help you to learn how to get down the stairs but i'm not sure how to help coping with the grief, the sadness and just the bad days
Sometimes, the best response is an open ear. Your comment tells me you are a caring person. I mean, you kind of have to be to do what you’re going to school for. I know you don’t want to hurt anyone by saying the wrong thing. It’s easy to see that. So, when you don’t know what to say, just listen. When you are teaching someone how to walk down the stairs, just make them feel good about every small accomplishment, and hopefully they see that losing a limb is not losing a life. I am a LBKA and losing mine was the start of a new life. For those that really get stuck in the depression, try to find them a “sponsor” so to speak. An amputee who has the attitude that all is good, and doesn’t see the amputation as a roadblock. I have been able to help a few here locally, and I know from people I’ve met that there are amputees willing to help amputees all over the world. #ampfam #chAMPion
@@thedesertpirate8247 Thank you for that kind and helpfull message! I dind't know that there was such thing as a sponsor! But i will keep that in mind for sure
@@lucilevandamme8750 well, you can find them but it’s not really a title or anything like that. I used it more to describe what I meant. Go to any prosthetists office, and talk with them. Tell them you have clients, or whatever you refer to them as, that could benefit from another amputees story, experience, and support. They will reach out to anyone of their clients that they think would be fitting. Of course, all protecting hipaa. They will get back to you with someone if they have anyone. Usually, my guy asks me if it’s okay to give my number to someone, I say yes, and they call me when they are ready. You can also find amputee support groups that can be beneficial for anyone having issues with being an amputee, or for anyone living with an amputee to get a better understanding. A lot of times people there are willing to help as well. I used the word “sponsor” because it’s used in AA and other support groups like that, and it’s a fitting role. I can help someone do anything, but I can’t do it for them.
Milea what the hell
Actually that is not going to be your job.... sorry to tell you, messing with peoples heads can actually get you kicked out of the profession.
We had a physiotherapist over here actually causing several suicides because he thought he knew better than the professionals.
(And gave his patients contradicting advice, lifestyle and medication, indirectly leading to their deaths.)
He finally got 'disbarred' over having sex with some of these very vulnerable patients as well.
(So glad I wasn't one of them! Being a student physiotherapist myself probably is what saved me.)
Totes agree! After my stroke people were generally either "You'r life must be over" or "Wow, how long did it take you to fully recover?". It was so frustrating. The truth is, as will all things, it was somewhere in the middle. True, I can't work anymore, but jeebus - I'm not dead! lol, Ugh.
I hate being patronized. I've been physically disabled all my life, I never noticed it much as a kid (the patronizing). But as I get older, it wears on me more and more. My abilities have drastically changed and I can't speak anymore, which is a blessing and a curse. I can easily ignore the comments. Physically, I present in a power wheelchair, double amputee, have a tracheostomy and on a ventilator. I am also happily married to my high school sweetheart, we have 3 adult children, and a myriad of pets. Before my health drastically changed, I used to work, I used to drive (yes, you can drive with a wheelchair), and I was just a normal, typical woman going about my business, and doing things anyone else would do. I am not different, I just do things differently.
I don't know what to say. I'd say I'm sorry for you, Yada Yada Yada, but you probably get too much of that. I hope you can still attain some measure of happiness and wish you the best
@@colejosephalexanderkashay683 I didn't mean to imply I was unhappy. Quite the opposite, I am happy.
I just get my feathers ruffled when I'm doing typically "normal" things and people treat it like some miracle or some feat that I am doing this. And it can make for some very awkward moments. For example, when my kids were younger (a boy and 2 girls), they were all in dance classes and had been for a few years. At one recital, my husband and I were tag-teaming the kids and getting them ready, I think I was doing finishing touches on the girls' hair, and this woman approaches me and asked me if these were my kids. I looked at her and slowly said yes, and then she started going on and on about how wonderful it was to see me interacting with my children and how I must find it a challenge to take care of 3 children and how amazing it is that a woman in a wheelchair can be a mom... I'm looking around at all the other parents doing exactly what I was doing. And that's the kind of thing that just really irks me.
Honestly when I read stuff like this, it just makes me angry at the system. Cause we have fully robotic limbs that allow people to feel and move them with their thoughts just like they do an organic limb. But since we live in a capitalist society where profit is the most important factor, this incredible technology has been left to rot in labs cause governments don't want to put the money out to make this tech widely available.
@@saulithyia I see what you are saying and I am glad to hear it. That has to be frustrating. It must be really hard to not even be able to speak any more though?
@@colejosephalexanderkashay683 It is frustrating not being able to speak, but on the flip side, me being able to breathe is a bit more important 😉
I imagine that learning to effectively communicate the difference between pain & pressure, ache, deep pain, sharp pain, etc takes time and attention to detail.
I used to be a massage therapist and sometimes getting people to understand the difference between a 'wee bit sore' and ' hurts like a mofo' are really different!!! Pain is subjective & as such the 1-10.scale isn't one I really like. I found the scale that uses old works of art to be way more effective lol.
Anyway, thanks for all your stories & opening up to us like this.
i love it when chatting videos are filmed with a bunch of different background, walking around the house, changing the environment every few minutes, keeps me way more entertained than just a one single background
Thanks for educating all of us on this joe
Thanks for listening!!
Thank you for bringing up that it isn't our job to inspire others and it isn't our responsibility to do more daring and accomplished things than most able bodied people just to justify our existence as disabled. When I'm trying to get my groceries I don't want to tell you my story and inconvenience or emotionally hurt myself to make you feel good about yourself, I just want to get my kitchen stocked.
I think you're inspiring not because you're running marathons and stuff (even tho that's incredible) but because you keep going and live every day through the hard times that's what i think is the most inspiring
I'm a right leg BKA amputee and I feel you !!! "....present myself as an able bodied person, even tho I am not one !!!". Thank you Jo, you're an absolute inspiration to myself, a 20+ year amputee !!!!!
Good morning Jo, life is good, spread a blessed day, and may it come back 10 fold...
Thank you Jo, you've answered a few of my questions. I'm still in pt and push myself rather hard to get back to "normal ". Walking and ballance is challenging but pursuing my ability to walk is slowly getting better. Ty
YOU GO MY DUDE! I'M PROUD!👏👏👏
8:30 This isn't traumatic, but I relate to having to figure out a quick way to explain something complicated because I moved to Sweden as a teenager and still have a noticeable American accent in Swedish. I have a short answer, a medium answer and a long answer, and I've gotten pretty good at gauging which one to give! I just wish that, like with your prosthetic, people would realize that it's not always a good time to answer a question that essentially boils down to 'Hey, you are obviously Different from the rest of Us, why is that?'. It is almost always meant in good faith, but that can still be an uncomfortable question!
I tell them “a shark, a rattlesnake, or baseball. You pick.”
They never guess, but my amputation is a result of a baseball injury. Well, more the bad surgeon that took care of it after a baseball injury. Regardless of what they say, the look on their faces is priceless.
@@thedesertpirate8247 a shark playing baseball with a rattlesnake
@@steggopotamus lmao. Nice.
Thank you for your honesty and bringing light to the fact that you are still JUST A PERSON like everyone else, whether they have one leg, two legs, one arm, two arms, etc. We're all just trying to get through life the best we can, and I love that you are trying to get through YOUR best life. It's a beautiful thing, regardless of "ability".
As a severely dyslexic person lots of parts of number 5 ring true for me.
I don't watch your videos because you are inspiring. I watch because you are you, and I learn some things I frankly never thought of.
I’ve found with a “regular” injury, surgery, and recovery that it takes about two years for my brain to catch up with the new body dynamics where movements and such become unconscious again. Have I said this before? Feels like I’ve said this before.
I’ve read that the process of acceptance with an amputation is about five years long.
Five months in on my ankle injury and I am already tired of explaining what happened (not an exciting story) and giving enough that they have some comprehension of why I still am not walking ok without a full info-dump. I actually miss the mundane questions…how’s work going? So…I can only imagine the struggle you have at deciding what and how much to tell.
That’s a cute Air B&B.
Do random people really just come up to you on the street to ask what happened? Is this something that happens frequently? I can't imagine coming up to a stranger to ask about something personal like that
Oh Jo... You have always been enough. Anyone who's ever thought different is completely wrong. ((hugs))
Per your comment about putting on makeup: You are one of the fortunate who look beautiful without make up!
YES! Communication is the toughest part of getting fitted for custom equipment, even for custom wheelchair seating!!!! You are so correct!!!
I find this to be 10000% accurate and freeing. Thank you! I found great value in seeing how you do stairs. I have told my husband 100x “jo can bounce down stairs, why can’t I?” Would you mind doing a video of how you leaned to do that? You touched on it in this video but maybe slow motion?
The beach on Hawaii! I can’t imagine that. Hope you guys had fun
I can relate so much to having to explain the situation every time I meet someone new. I am not an amputee but I am disabled. I get anxiety even meeting a new doctor because I _know_ they're going to ask about my medical history. They have to. They wouldn't be doing their job if they didn't. Then, take that same anxiety inducing experience and apply it to an everyday person that doesn't know medical stuff and it can be exhausting. I finally figured out if I just say, "I have nerve damage in my face and jaw that causes migraines and seizures," most people will accept that and are really sweet about it. They'll usually be considerate and don't expect me to talk much, are okay with me texting them my part of the conversation even though I'm standing right in front of them, and understand why I'm wearing sunglasses inside. Even though the go-to, rehearsed sentence I use doesn't accurately describe my disability, it serves the purpose of satisfying their curiosity and gets the conversation moving on to other things. The exception is that it doesn't usually work on doctors but it's a starting point for them to dig in and ask their follow up questions.
I appreciate everything you're doing to raise awareness and destigmatize disabilities in general.
I just want to say I personally think it's wonderful if you want to text your side if the conversation while standing right there in person. I can't even number the amount of times I've wished life worked that way. I'm very much someone who communicates better in writing than in speech. The words and ideas just flow way better for me that way. And I love reading so the idea of reading someone's text in in person conversation wouldn't bother me either.
I'm trying to raise my child to accept variations in people and the world with a hugely open mind, and view them all the same. If someone needs a wheelchair we talk about how cool it is they have their own wheels. If someone has an oxygen tank we talk about that's to carry around their extra air. I have asthma, and he's starting to develop it, and we use and practice using our inhalers and my nebulizer regularly, and he's starting to understand it helps stop the coughing and the tightness that can be very painful. We haven't personally encountered an amputee or someone with your needs and limitations in our real lives yet, but I'm hoping I can teach him to accept those things as normal and equal too. I really really want him to grow up knowing everyone is equal. They may have different ways of doing things than us, but everyone is equal.
Your example helps me to further open my mind for things to look out for, and ways to understand other people, which will help me to teach him as he grows up. So thank you for sharing yours.
@@thayerwilliams905 That's so great. It sounds like you're a great parent and have a smart, caring kid. Thank you for the reply. If the whole world were like you, it would be a better place. I also just wanted to clarify that I really don't mind the curiosity. I actually prefer to address my disability right away so there's no awkwardness. When I said it is exhausting, I mean when people respond to me with sentences that begin with phrases like, "Well, why don't you just..." or "Oh, I have that too and I did this..." or "What you need to do is...". Most of them mean well, their hearts are in the right place, they just want to help, but it gets exhausting having to explain over and over that anything they can think of, I've already tried 100 times and/or it's not "just TMJ" or "just headaches". Most people, like yourself, are really sweet about it and I'm happy to answer questions and explain it. I just get tired when I feel like I'm getting sucked into having to justify the way I am because the person I'm talking to is trying to diminish or minimize it or diagnose me and treat me with no ...sorry. I'm getting worked up just talking about it. Again, thanks for the kind reply. You are one of the good ones :)
@@xliquidflames I don't blame you. I can understand why that would be exhausting. I don't even like a stranger coming up behind me in line somewhere asking how long I've been waiting. I have no idea if it's going to be that one question or if I'm unknowingly signing up for 10 minutes of mind-numbing small talk, and I hate that moment of having to decide to answer and roll the roulette wheel. It absolutely makes sense what you're saying.
I've also got several invisible health issues that cause me a lot of pain, and have permanently changed how I do certain things, or I do them at all. I tried to get help for nerve pain in my lady bits for 14 years. Every Dr said they couldn't see anything wrong, and it must be an allergy. I was in 7/10 pain the literal second I woke up, and it went up the minute I moved. My relationship at the time stopped believing me after dr number 3. My "nickname " became pathological liar. I've always had teeth and gums that went way, way beyond typical "sensitivity ". Childhood dental trips were truly traumatic. I wasn't diagnosed or treated for either issue until the last few years. I got so tired of defending myself for needing my ice cream to melt before I could eat it because the pain of it touching any of my teeth while cold was unbearable. Intimacy still involves several medications, including lidocaine, because if I don't it feels like I am literally on fire before being ripped apart. I also have difficulty separating sounds if several are happening at the same time. A conversation in a crowded room makes me panic, because I'm struggling so hard to understand. It's not my actual hearing. It's my brain hearing multiple sounds and not being able to choose just 1 to focus on. I've spent most of my life being laughed at or being told no when I asked to watch something with the subtitles on, because the background music in movies gets really strong during important plot points, and I couldn't figure out what was being said. We'd leave the theater and I'd say that movie didn't make sense, and whoever I was with would look at me like I was a moron, before Essentially telling me so in words.
All of these things are invisible. My bits and my face being on fire all the time is invisible. Me frantically guessing what's being said in public areas, that's invisible. My lungs closing up and a migraine starting every time I have to smell cigarette smoke, that's pretty invisible. I don't talk about them specifically because I'm tired of explaining why they're still real, and the offered advice has already been tried and failed. I also hate the taste of meat. I let people assume I'm vegetarian for ethical reasons because no one wants to hear about those. Telling them the taste is disgusting to me always turns into, you just haven't had GOOD meat. You'll love the way I make it.
I think it's wonderful when someone is open to talking about deeply personal stuff like disabilities or birth defects, because that can take a lot of the fear response away from strangers seeing it for the first time. But I also can't imagine having visible disabilities myself and having to mentally prepare for that conversation every time I leave the house. I think it's incredible, anyone who's willing to have that on the spot talk with total strangers. I have so much respect for that. But if I come across someone with one I can see who looks like they want to be left alone, I also want my son to learn to recognize that and be happy just letting that person be, because no one's entitled to get that question answered any and every time they want. But if you have any tips from your personal experience to tell the difference I'd love to know them so he and I can both become better, more considerate human beings.
I have learned so much recently watching your videos!
Thank you so much for being open to listening!!! Thanks for being here :)
@@FootlessJo I really found it interesting when you spoke about being expected to be inspiring, or compared to people doing exceptional things. I have been my mums carer since I was 13, she uses a wheelchair outside of the house, because inside everything is reachable. When she has to go into hospital it can be a fight for them to take her wheelchair, she has said before you wouldnt ask someone to leave their legs at home so why ask me to leave mine.
It is very hard for people to understand her difficulties and pain and being an advocate is hard too because I can't explain if her pain is crushing or burning or cramping etc.
It is always a learning curve and I am grateful.
Thank you for addressing these questions the way you did, Ms. Jo! My respect for you as a person continues to grow!
Yasssss, early for one of my favessssss 🥳
Yayyy thanks for being here!!!
I just wanted to say you are an incredible person and thank you so much for sharing your journey with everyone. That takes guts, but you are making a huge difference 🧡
I love you spirit. Learned and developed through life learning. You are a gem.
So glad I watched this video because everything you said makes so much sense AND I'm excited to hear about the AWS courses because I didn't know those ones existed and I'm totally into it!
Jo, I love you so much!!!! Thank you for being so real and honest!!! Your authenticity is changing the world!!!! 💜💜💜
I love watching your videos Jo. I’m a medic with PTSD. I’ve learned so much from your videos. Thank you for sharing your story and your insights!
Good video. Thank you for your time on telling us more about your amputation. Continue on your road on getting the giant gold play button
I can see where you are coming from. When I broke my leg it looked like a toothpick. It took therapy and practice to learn to walk again. Even though I still have my leg it's not the same as it used to be. Sometimes my foot catches on the surface I am walking on, since there isn't the full range of motion in my ankle there used to be. I credit part of my recovery to roller skating and being able to get the muscles exercising again. Have an excellent day. Love your videos.
I love your honesty, I’d never thought about the amount of planning that it would take just to go on holiday. I just had no idea how hard or how many changes that you have to make to do everything. We need more people like you. ❤️
Love your energy in all your videos. I love that you said you don’t feel the need for makeup to talk to us, it’s comfortable and feels like we are meeting up with a friend! Your videos always feel cosy, I hope that makes sense!
Much respect for you being so open.
Somehow Your videos were recommended to me recently and I've been binge watching them lol. It's amazing how people are, like "if it was me my life would be over". As someone who lives in chronic pain land and looks "able-bodied" it just make me shake my head. I use to wear a giant knee brace in the summer that would attract stares. Another situation with stares was one time I was in the mall, and someone actively moved away from me because they saw the knee brace. People get super weird around people who have something that stands out physically. I agree there are the 2 groups generally of encounter, the people who pity or the people who think you're an inspiration just for doing the bare minimum of getting out and living your life. I don't understand where this mindset of those disabled must just sit at home and never go anywhere or do anything. Note I also have back & neck issues on top of my knee dislocation problem. However, I still manage to work, play sports, drive, etc. like everyone else. Those with a disability or physical challenges aren't this miraculous specimen to be gawked at and judged. We aren't to be used for others inspirational porn. I work with the Deaf community as a sign language interpreter and it just boggles my mind how people react to that. My physical limitations now are mostly hidden due to people can't see the back and neck injuries from my car accident a few years ago, and I don't wear a giant black knee brace that people can see because I've worked so I don't have to wear it, unless it's stupid and makes me fall. Other than in summer time when people can see my knee surgery scar most people don't know I have any issue. So I've been on both sides of having a visible and invisible disabilities and honestly there are pros and cons to both. Yet our society seems to deem those with those types of challenges as less worthy in society. We aren't here to make others feel good about themselves. Sorry this is a long rant. It's just after years of dealing with society's reaction toward me in terms of my challenges, I'm a bit salty at times. Love your videos keep them coming. Also, I live for your humor in regards to your leg because my humor is very similar. Here's to us with bum legs, kicking everyone's ass daily.
I've just come across your channel and your content is fantastic. Very educational and fun while still being realistic.
I found a lot of the things you mentioned relatable. I was diagnosed with epilepsy at 13 (it was kind of dormant before that) and had to relearn my body, prepare a lot more for things that I used to not think about, deal with the emotional fallout of "this is my life now."
TLDR; subscribed!
You’re an amazing positive lady. The world needs more people like you!!!!
You are always bright and beautiful jo you are an amazing strong person you don't owe anyone answers you a beautiful woman inside and out love you jo i really look up to you your perfect the way you are
Love this video! I'm going to send this to all of my amputee peers. You pretty much hit the nail on the head with all of your points. I needed and would have loved this video when I first was amputated three years ago! -Avelino
This is such a great channel. I have a daughter with a severe disability. She had her first set of full leg braces at 3. 17 major surgeries in 17 years later, and about 20 sets of braces, and she finally gave up, and went to a power chair full time. Working with prosthetics and orthotics is a huge life challange. You are handling yours very well. Thanks for sharing.
I'm going for my first prothsetic appointment on the 15th. I'm nervous and excited about it. Your videos are so helpful. I've definitely learned from you that I need to manage my expectations and not compare my healing and journey with others. Thank you.
Thank you Jo for this video. I felt like i was listening to a ted talk just for me 😊 i have been an amputee for 6 weeks now and i cant tell you how much i needed to hear a lot of what you said. Its crazy that we can all have such similar mental rollercoasters when we go through this. The idea of no longer being invisible in public is a big one. And not feeling like I have to be doing great every day! Just being me and getting through this hard thing is enough. Thank you for sharing your experiences! 😊
Thanks for sharing your morning! Love the chess game lol. Your wit and directness is refreshing!
A great and educational video as always but I'm not going to lie, I had a chuckle at "sorry for cussing, dad!" ❤️
Haha glad you enjoyed it, thank you so much!!
i just wanted to thank you for educating people on the world of amputees! i don’t have any (physical) disabilities, and i feel like, if anything, that means i should learn even more about those who do! i really appreciate you and all of the information you give out
There is a lot of great content on your channel and this feels like the perfect "intro" video to get started before diving into the details, especially for people facing amputation.
You touched on a wide range of subjects that are all really important for physical, emotional and phychological health.
I am not disabled myself and don't have anyone close who is. I'm watching your content out of honest curiosity and for the mental health advice.
But this feels like the kind of information I would be immensely greatful to get early on, if I was ever in the situation of having to get an amputation.
Sure you'll get a lot of advice, brochures and book recommendations from the doctors.
But as an overview to get your bearings initially or revisit later on to evaluate overall progress, this video seems to be doing a great job. And even the sponsor message has some great advice and is not just selling a product.
My family member who is disabled has also mentioned the assumption some people have that they should be “inspirational”. I am glad that you brought up that topic. People who are disabled should not be expected to spend their time trying to be inspirational for everyone.
I am someone that has a long team problems that no one see. I love the grace you let even me to just be me. That I have a healing way. Thank you!
I love your frank, honest perspective on things that non-amputees might misunderstand or get wrong, and I love hearing about all the aspects of everyday life that I wouldn't have thought of normally. You're terrific, Jo.
Much of what you shared was what my friend who is a right leg amptee experienced. He shared about how people would come up to him in public and ask what had happened to him, while some would stared at his leg. Sometimes it can be too much, and uncomfortable explaining to strangers who are more interested with your impairment and not you as a person. Thanks for sharing 👍✌️🤟
I love your channel. Thank you. You make life so much easier
When our youngest child was born with visible differences / disability, I found people's reactions really frustrating. Sure, she's had struggles, and dealing with the health and social issues that come with her particular condition brings innumerable challenges, but much of it pales in comparison with the struggles of getting accommodations for our older, neurodiverse children's less-visible differences (as well as our own). I see some of those experiences mirrored in your efforts to reconcile the perceived challenges of learning new physical skills, versus reckoning with the social-emotional impacts of your life as an amputee. Thanks for all of the amazing content you put out into the world!
jo: I was thinking on putting on makeup to look pretty for the camera
queen ur already pretty with or without makeup
I love your sunny attitude ☀️😀
I will say, Jo - you DO inspire me. Not because you kept living life after you lost your leg. But because you've had this tremendous loss and are still so happy. The fact that something this traumatic happened to you, and you can move on from it is... Amazing. I know that I'd never be able to do that.
How do you know she’s happy though? Appearing happy doesn’t mean it’s happiness all the time. I also appear happy and an inspiration to my colleagues but when I’m alone the darkness and doubts creep in. Also the human spirit is much stronger than you might think. I’m sure you’d do just fine.
To all the idiots at that invade your space, don’t give them another thought. I discovered your channel by accident and am thoroughly enjoying it. You answer questions clearly and openly. But as a fan I would never expect you to drop everything to answer my questions or put up with rude stares out in public, if and when I need something ( a question, your thoughts on something etc.) this is where I would ask it. Not on the street when you’re out and about. Thanks for such an informative channel!
Hey Jo, thanks so much for sharing what you did today. What I wanted to say that I found the most fascinating and interesting is that whole thing that you called I think inspirational porn. And it really sets up the disabled person to be something that maybe they're not. It seems like a lot of pressure to fulfill people's fantasies of what it's like to be disabled and give inspiration. I really appreciate you sharing the mental aspects of your loss that helps me the most because I deal with severe mental problems such as depression complex PTSD and those cripple my life a lot. So thank you so much have a wonderful day Jo
You go through everything I go through that's incredible! Thanks for this channel. If your in pain with the leg try different liners.
The rehearsed script thing is really important and I recommend it so much for any hard to answer questions that you get often. It will make your life so much easier
Your videos are so helpful. Thank you for them.
u have the best vibes, keep up the important work ❤️❤️❤️
I have a facial difference and I’ve lived my whole life with people who feel like they have a right to know “what’s wrong with your (my) face.”
It is exhausting and I’m not someone’s teachable’s moment.
Im on the other people’s expectations. People assume because I look SO different that I couldn’t possibly be independent etc. inspirational porn is so annoying and it is exhausting.
I don’t go out a lot because after 40 years of dealing with people starting at me I’ve reached my limit. Im at the point I tell people to F off. I don’t have time for people’s curiosity when I’m out buying my groceries or prescriptions.
Do you also get a lot of people going “oh my so in so’s, family also lost a limb”…. Those are fun convos. LOL
Yes!! You are not for teaching other people. For goodness' sake I don't get why people (who look normal) think there's anything to teach.
The intentional level of comfort with yourself that you project is the most enthralling thing about you. I'm not sure if it even a thought process that you are aware of. I just seem unbelievably natural. to have that kind of ease of self regardless of what the circumstance just blows me away
I don't watch your videos for the topics, but for your positivity.
I'm waiting for the surgery for amputation as been waiting since lockdown and I've been dreading it but since I seen this, I'm a little less apprehensive of what to expect so I can only say thank you for helping me get prepared for what's to come
Thank you 🙏 Joe . I’m just sitting in the waiting room to see my Doctor about lower leg amputation.
Thank you for sharing this.
This was a good video. I guessed it would be stairs that were the toughest physical adjustment. I had the experience of double walking cast boots for a couple months and stairs were so difficult in that situation. Also cobblestones, but I only walked on those once.
Jo, you are inspiring because you are you. With all the faults that cause us all to stumble. You expose your struggles and because you have the courage to do that you give other people permission to try and stumble and get up again to try again. You don't have to be a superhero. But letting your feelings out and showing it's not always as simple as in the movies, it helps other people to deal with failing and still coming back to progress. That's what life really is and sometimes people can't handle the truth. But to live we all have to work it thru. You're Great! I Love You. I never had a daughter but if I had one and it was you, I would be so very proud.
Getting fitted for my prosthesis this week have my compression sock today
i love hearing your point of view! (idk how to phrase this but like your perspective on life ig)
I feel I can do this now! Thank you!
I am just starting with my new leg. I'm an raka. It gets so frustrating having to keep getting my leg adjusted. I just want to walk and it's not happening for me yet. I love watching your channel. You are so positive and that keeps me positive!
I'd love to learn how you put on shoes - you've mentioned before that it's tricky and I'm curious how you've adapted. Super interesting video! Love your channel!
U are so genuine I love it
Respect Footless Jo
You are an inspiration to me. The only thing I was having trouble with was going up and down stairs. You really cleared that up for me. Thank you. I love watching your videos and I love you and your positive outlook on your situation. It makes me feel more positive about my life. I am also a below the knee on my right leg.
Out of curiosity, and of course only if I may ask, what is your k level? I have a 4, the Blatchford Blade XT, and it still isn’t enough for me. The foot I started with however was a 3. I love that foot…if I’m just standing. With that foot stairs where a little…tricky maybe? But the foot I have now, I can sprint up the stairs again. Of course, I also have more experience with stairs and just being an amputee in general than I did when I had the other foot.
@@thedesertpirate8247 I don't know what a k level is. All I know about my foot is that it has a hydraulic ankle. I don't have any problems doing anything except the stairs. When I am going down I feel like I am flying off into space. Kind of like when we were kids and ran down the stairs and almost hit the wall in front of us😆 If you have any advice I would really appreciate it. What foot do you have now?? Maybe I will ask my prosthesis about it. Thanks.
@@phyllisprice2640 k level is the activity level of your foot. The one I have is for running, cycling, etc. I use it rock climbing, canyoneering, hiking, I’m riding atvs, basically everything. Lol. But the one I had before had a different ankle and it wasn’t as steady. That was my issue. I was wondering if that was what you were experiencing. But if I’m understanding you correctly it’s the feeling of nothing under your foot when you go down stairs, right? I would just say look at it. Watch it. The more you trust it, the more you can do. I feel the ground when I step. Obviously not in my foot, but in my knee. I know when I make contact. But…there is so much that can play into the different sensations we experience.
@@thedesertpirate8247 I don't do anything dramatic so I just got a foot for walking. So that is probably why I didn't know the other stuff. Yeah it is kind of a feeling of not feeling the stairs under my foot. But I do feel the ground when I step just fine, I know they are there. My foot is pretty steady though. Do you mean watch my foot when I am going down the stairs?? Because I always look straight ahead like I always did before. Looking down at it makes good sense though. That way I can kind of form more of a connection between the foot and my mind. Does that make sense?? You are really being a big help to me😁 Thank you so much.
@@phyllisprice2640 yes I mean literally watch your foot. Look at it and watch it hit the step, and notice all the feelings in your knee, hip, back, etc. from when it makes contact. You’ve got it all when your walking apparently, but going down stairs has you still a little uneasy. That’s totally fair too. We have one foot to balance with and stairs hurt. The brain is a powerful thing. It might need to relearn the feeling of going down stairs. It’s still waiting for that reassurance from your foot touching the stairs that it’s there. Most likely subconsciously. It’s weird isn’t it? We can feel so sure if our foot in once scenario, but in another…how do you put trust in something you can’t feel, right? I experience that too. It’s normal. For me, I just remind myself, even if I have to say it out loud, that I’ve stepped on it 100’s of 1000’s of times and it’s never failed me…I got this. And I laugh at myself afterwards for being scared. Lol. But when you make it down those stairs, remember one thing…you did it. That’s the number one key ingredient to success. Giving yourself credit for what you’ve achieved, and pushing forward for more. No matter the pace. If it takes you a year to go downstairs confidently, then it takes a year.
I work in a customer service field, and learn to be empathetic and not make the same dumb mistakes is a continuously evolving learning process. Some things I figured out on my own, like: if you don't know sign language, pull out a pen and paper to converse with people who are hearing impaired, don't touch a wheelchair without permission,, etc. But sometimes, being an empathetic person isn't enough. I would like to thank you for helping me live with my own amputation (toe), and my journey to not only be a better person, but also to train others to be.
The term of 'acceptably disabled' is amazing.
What I learned from a book written by a master of biologoy AND theology was the following.
On the first doctor's general check-up, roughly 20% of all people are diagnosed with one kind of illness or another.
Send those same people who were diagnosed as 'healthy' to the next specialist, and suddenly of the original total around 50% now show some kind of illness.
Repeat that process a mere two or three more times, and at the end you will have either a specific illness the other doctors did not find, or you are diagnosed as a hypochondriac, also requiring a mental therapy´. So 100% of people will have some kind of disease or illness.
Which means that EVERYONE is essentially ill. There are *NO* healthy people around.
So the definition of 'healthy' should not be the lack of any disease or illness, but something different:
"Healthy is the condition in which I can live comfortably with my diseases."
Your term of 'acceptably disabled' plays into that reasoning. But for you let's exchange 'healthy' with disabled.
Your term of 'disabled' should be "That's the condition of being able to comfortably (more or less) live with my disability."
That's how the rest of society should treat you as well. If you seem 'healthy' by the above definition, and you are (reasonably) happy with your condition people should treat you as such.
Period.
If you look like you are struggling with something, an OFFER of help is probably highly appreciated. But that is similar to ANYONE, full meat limbs or not, who is struggling with some task or another. Be it a small person having problems reaching a top shelf in the supermarket, and you OFFER help. Or a disabled person who finds themselves with a suddenly locked prosthetic limb due to a malfunction and now are struggling to carry their groceries down stairs. It's just common decency that should result in *offers* of help.