Man With Fatal Skin Condition Plans His Own Funeral | BAFTA-Winning Documentary | Real Stories
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- เผยแพร่เมื่อ 21 ธ.ค. 2016
- Jonny Kennedy: The Man Whose Skin Fell Off (BAFTA-AWARD WINNING DOCUMENTARY) | Real Stories
Jonny Kennedy is a man with a lot to do. He’s got just four months to move home, meet Nell McAndrew, fly a plane, visit Downing Street... and plan his own funeral.
So Johnny decided to work with filmmaker Patrick Collerton to document his last months, resulting in this uplifting, confounding and provocatively humorous story. Though not shying away from the grim reality, the film is a celebration of a life lived to the full. It features an interview with his mother Edna who has been his life-long carer and now faces the prospect of Johnny’s death with disarming mixed feelings.
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The Man Whose Skin Fell Off (BAFTA-AWARD-WINNING DOCUMENTARY) - Real Stories
Wait....so he put a symbol on his coffin that doesn’t have anything to do with anything just to confuse people??
This man was a GENIUS!!
Not only that, he specially asked for the *Heinz baked beans label*. On his coffin.
He's amazing.
CourtneyMarie 6661 Never knew u could design ur own coffin.
fun guy!
He definitively got the last laugh 😂
@@liztrainer895 you can, but usually people don't know when they will die, and when they do, they don't want to think about it
“Constant wanking just doesnt go well with the condition” that man was a comedic genius. RIP
😋 100% Man right there. Oh so many people could use Jonnys tounge in cheek appreciation. 😇 yes, includes me.
Lol. He had a wicked witty personality despite all his pain.Seemed like a great guy and what a wonderful mother and family. The mother is a saint, what pain in her heart to have to watch her son suffer all those years and take care of his every need.
She really broke at the end when they played his favorite song at the funeral 😞😞😞 I feel so bad for her and Johnny's family!!! Johnny shouldn't of died :'( he shouldn't of went through that...he has the best personality any person could have...his determination and strong Will just blows me away...I wish I could've met him 😞😪
@@booboobearsugarbear9109 Aww HUGGLES Sister. He was here to teach, no doubt . He had ALOT to say and it was granted that he could. Xoxo
@@donnayork816 I shed tears SO MUCH wen changing his back bandages 😔 Ive got pesticide Roundup ?boils?? Scab and ITCH. 1st shower and i wentt to my knees. Thank you Miss
Donna for hearing me.
Eighteen years after his death Jonny has made me smile, laugh, and now cry. What a devastating loss. I hope you're in peace now, Jonny.
Amen.
Amen.
He's not really gone. His spirit is living on.
@@bastian6173 atats
Jesus Christ is powerful Peace Holy and Saviour in World amen 🙏💗is Really
i think about jonny a lot. even 19 years after his death he’s still making an impact on people. rip ❤
Amen!
I also think of him often. He’s around!
@KotasMama I am not religious but I have watched this video over and over a few times. It seems that psychologically it is good preparation . I am not expecting to leave this earth soon but it gives you something to think about.
Here it is 2020 and I'm just hearing about this and watching it for the first time. What an amazing man Jonny was. R.I.P. JONNY.. who else is just watching this for the first time in 2020?
I am,im 30 minutes in,and im crying my ars off.what an awesome amazing person he was,right?
Me too ouff so toutching
It give me tears RIP Jonny
Mary Peters yup just started watching.
Im actually just sitting here watching it now. March 13, 2020. What an amazing man Johnny was, I absolutely love his personality. R.I.P Johnny Fly with the angels now
I can imagine him saying “alright bye then” before he dies
Bineapple Bizza 😭😭😭 RIP Johnny
Bineapple Bizza no man don’t say that. It’s funny but thinking about him kicking the bucket makes me feel horrible for him.
Erengrad 45 honestly, it was probably peaceful for him to be able to let go and relieve himself from all the suffering he had to endure. I imagine he is happy where he is now and that’s what matters the most to me at least
lol
ME and him r both boys ily 4erver
“Any severe friction, such as constant wanking” 😂😂😂 I love his sense of humor, even in the worst of times he stays positive and just wants to make people smile. This is my second time now watching this documentary and I’m sure I’ll be back in the future for those laughs. RIP ❤️
What got me at the end... his mother, sitting there in clear grief, yet still mouthing the words to her sons favourite song. Such a heartfelt moment of love.
Dude just sat there watching his coffin being made and designing the whole thing like a boss!
Normal'sWayOverrated My great grand aunt did the same, but with the headstone on the grave as well. She thought she was poor, but as we started to take over her bills and bank accounts, we discovered she was a millionaire. She was thrilled and went bananas with the grave stone, picking the most beautiful and expensive stone, inscriptions, lanterns etc. From living a life in poverty, she got buried as a royal.
The fun thing is that after her gravestone was put up, (she is buried at the most posh graveyard) everyone copied her stone and style, so now everyone has the exact copy. I bet she is laughing out loud up there in heaven, loving that she started a trend. ❤️
@@lillylove3508 How do you not know you have a million dollars?
Billsama Bin Clinten I was thinking the same.
@@lillylove3508 wait what? She thought she was poor, and didnt have any idea she was a millionaire?? Let me guess then everyone stood up and clapped after all that happened
@@lillylove3508 well it must be true i seen it on the internet and who would lie on the internet
He's savage as hell. Looked death in the face and spat in its eye.
Chicken Tenders aye I believe he would.
Gavin Macpherson-Smith please explain what you mean by beej. Is beej another word for beetroot?
If he said wanking alone was painful, what makes you think a BJ wouldn't be?
Sanjyukyu Hime skin would come off in her mouth. Your welcome for the visual.
he never went through puberty though, which I guess means no physical desires?
I first saw this documentary a few years ago and watch it now and then for gratitude and perspective. I have a blistering skin condition called Porphyria Cutania Tarda that I acquired after receiving massive doses of antibiotics to fight MRSA. The antibiotics damaged my liver to the point that my sun-exposed skin is very fragile and often becomes a sore or lesion if I’ve banged it or somehow injured myself. It's ugly and embarrassing, and especially painful when people stare. When I get to the point of feeling sorry for myself I have to remember that there are people who have more suffering and hardship. Jonny Kennedy has shown me through his courage and humor that I can pick myself up and move forward. God bless Jonny and his family for participating in this document to bring about EB awareness and help all of us who are going through something that there is so much to be grateful for even in the darkest situations. Rest in Peace, Jonny 🩵🕊️✝️
Wishing you the best! 💙
The part where his bandages were being changed, just killed me. I just realized I don't have problems. RIP Johnny
I know 😭😭💔
I sit here with a list of chronic illnesses and genetic illnesses, and I have to admit that even at my worst, I still couldn't compare to the agony of that bandage change.
We all have our problems! His should minimize yours! "Others have it worse" is useful at times but don't forget that we all sit in the same boat, we're all humans and we all share the same fate of aging, sickness and death. But yeah, Jonny is a hero!
it made me reflect on my life ,and i realized how stupid and ungrateful horrible person i have been..damn me, i wont take life and family for granted anymore
Same
His mother deserves "the best nurse" award. He survived so long without dying from a wound infection. RIP Johnny.
@Severin Dahl ooo edgy
@Severin Dahl Hate women much ???
Severin Dahl Be a better person.
Worse, she had to man up so to speak. Because not only was he in pain buthe washerson! Imagine how it felt for him thatjust to cry hurt too much.
Right 36 years!!!
I could never in a million years have the strength that he had.
Same here 😥, and I complaint about my life.
I don't think no one would want to live like a f that's a freackin nightmare man
U would if u lived through the pain that he had
really humbles you huh, does to me, all the things we take for granted like our health, i like to think im strong but i dont think i am.
such a great comment " Daniel Thomas " thanks so much that's the greatest phrase in all man kind through all the history except when Logan paul filmed a body or when Ricegum promoted a false money baiting game thanks for existing i really started believing that the reason god created us just so you can create this comment ! now after you wrote this comment. We can peacefully die and god can finally kill us all
I'm glad they changed it to, "The MAN whose skin fell off", rather than "The BOY whose skin fell off". Rest In Peace and fly in the sky Jonny!
I love him, absolutely hilarious. Not sitting about sulking and moaning about the cards he’s been dealt, instead he’s cracking jokes and making the most out of his life. God bless him and I hope in heaven he’s having a blast.
There is no heaven do you have avedence there is?
despite being 36, jonny acted exactly like a 90-year-old who acts young
I had a 90 year old friend when I was 12. He told me "I might be older, but my mind is still as ridiculous as it was when I was your age, maybe just a little more zany from being in this world."
he’s an old soul 😌
He's been through alot.
He was still a virgin
@@codyrichey810 no different from yourself.
Dude made me laugh and cry 18 years in the future, he lives forever now
Ikr, he made me laugh with the constant wanking comment, then talking about seeing down that chicks shirt🤣🤣🤣... The world lost a wonderful funny soul the day he passed away, SOOOOOO sad😓... Rip❤️❤️❤️❤️🌹🌹🌹🌹
His mother deserves to be sainted because the fact that Johnny lived as long as he did is a goddamn miracle.
especially with the type he has- it seems he has RDEB which is the most severe form of EB you can have, and the life expectancy is just 30 years
In my opinion, it would have been very better making an abortion, in order to avoid this painful life to her son. Don't you agree?
@@AlessioGiandomenicoMameli They mentioned that the interuterine test wasn't available at the time she was pregnant, so she didn't know. She says during the video that she would have aborted if she had known.
@@AlessioGiandomenicoMameli chiaramente non hai visto o capito quello che è stato detto nel video,la madre dice chiaramente che l'avrebbe fatto se ci fosse stato il test per saperlo in anticipo...
@@AlessioGiandomenicoMameli Yes I would never want my child to suffer so much It would kill me
“I want people sitting at my funeral nudging each other going ‘what’s with the Heinz beans logo’”
I would’ve loved to be friends with this guy he’s basically bilbo baggins
А что за заболевание у чела
Though he ended up getting cremated with ashes thrown.
He had funny wit. God bless him!
I have cancer and was given a year 3 months ago but I'm fighting with chemotherapy and radiation so far.
jackie Jamieson sending you lots of love ❤️
❤
My dad was diagnosed with cancer at age 22 and was given 6 months left to live. He just turned 62 🙏🏻 Thank God❤️ My father says he healed him self by staying positive and believing he would get better. Attitude is everything. Sending you lots of love❤️🙏🏻
@@Gleyi07 thanks so much I've been trying to stay positive I also believe our mental state plays a very large roll in our ability to heal. I'm glad to hear about your dad I lost my father to cancer when I was 18 and he was my best friend. I appreciate you taking the time to comment that every single positive message or reply I get actually means so much to me so ty again!!❤
How are you doing now sweetie
Watching him get his bandages changed was excruciating. I just burst into tears. I have so much love for him and yet don't know him personally.
He has the most amazing personality, and I believe we all could learn something from him.
Thankfully he is no longer inside the body that caused him so much pain.
May you fly high Johnny Rest Peacefully
Extremely painful. I hated being in same room when my nephew had to go through it
@@mom4u412012 I am so sorry. It is so unfair for anyone to have to go through that. whether seeing it or experiencing it.
@@leahmarshall1593 thanks. I miss mike everyday. But glad his pain is gone
That's a really nice comment Leah.
I know you're a nice person.
I found it very sad too and it really those put things in perspective about problems we have in our own life's.
I'm not making light of anyone's personal problems but very few people have had to deal with conditions like poor Jonny.
Have a nice day.
@@iminyourhead9936 Thank you. Yes you are so right, it definitely makes certain issues in our day to day lives seem silly in the grand scheme of things.
I hope your experiencing happiness and success
It is January 2022. I have watched this so many times dealing with my own illness. Crying myself to sleep and realizing after watching this and wiping my tears away and knowing it could always be worse and to be thankful to still be alive after 27 years on this earth. The joy he has brought me and the perspective he has given me has always made me feel better. Thank you Johnny.
The fact he joked and humored with his situation, but then cried to his mother about it. It broke me man. I can relate to that and I know how it feels. Smiling through the pain and laughing at fear. He deserved better, he was so strong and I'm glad he was able to live life to his fullest.
just a big virtual hug for you! feeling the same here... and at the same time, watching this, makes me count all my blessings another time and feel really really grateful for all my flaws, mistakes and shortcomings ...
I'm agree. What a lovely soul and man. R. I. P. Jonny 🌠
"Smiling through the pain and laughing at fear"... Man, I cannot express how much I was touched by these words of yours.
Me too, he had just an amazing personality! R.I.P Johnny
Man was a true soilder
He's got that old Hollywood star type personality- one line zingers and sarcasm.
Where?
True wit.
Almost like that short guy with the glasses that came in the Jumanji movie I think his name is Danny Devito
MAURA YOU NAILED IT!
accurate!
I spent the whole documentary bawling my eyes out. I wish he could have gotten the love he so desperately deserved and ached for, but I'm glad he got it from his family. It's obvious that he was greatly loved and is obviously sorely missed. His mother was an absolute angel. You left a mark on the world, Jonny, even all these years later. You made a difference.
20 years later and I still return once in a while to watch Johnny again!
this dude put the heinz bean logo in his coffin, what mad man i love him
Absolute madlad
@@marjunordman2797 the maddest of lads, we respect
Definatly a legend! I’ve seen many videos about his life and it never stopped amazing me how he can have such an amazing outlook on life and be so funny like that with what he had to go thru. Ugh. I hear “eb” and immediently cringe. It has to be the worse condition I’ve ever seen... just so heartbreaking and imagining how much pain he must have been in all of his life ... just don’t know how he did it and I’ll always admire that about him and look up to him for sure!! ANYWAYS I’m rambling sorry lol I was gnna say I thought the coffin idea was genious and want to do a similar idea on my casket too lol :)
@@marjunordman2797 jjjjjjjjjjjjjjjjjjjjjjjjjjjjjhjjjhjjjjhjhhhhjj
@ak on your comment was not needed 🤪
This man looked death in the eye, and gave it the middle finger!
Two fingers, we are in England !
Even grim reaper must've smiled to johnny and welcomed him.
Thats the opposite of the truth.
Pretty much
Because he knew he wasn’t going to have it much longer
Can't believe its going to be 18 yrs since he has passed. Was good to see this again.
💐💐🕯️💐💐
19:24 Hearing him sing the "lyrics" in church made me LOSE it. This guy had some funnies. I know his humor was to help him cope with his stuff and make it easier for people to talk to him, but hot damn did he do it well.
19:44
“I never knew the words...
I was always a crap singerrrr...”
We didn’t deserve Johnny.
I started laughing out loud so hard at that part. He was very funny.
I just caught this. Man he was a great guy.
You bad asf 😂🤤 but rip
Yeah I thought he was pretty funny.
I didn't catch that. I was just like, it doesn't sound like he's singing the same words as everyone else. Lol
When a man no longer fears his death, he lives his life to the fullest.
I salute Jonny's mother for her unfailing dedication. What strength of character!
This documentary broke my heart. Makes me ashamed for ever complaining how difficult life is. That guy is a trooper and a real man.
One of the parts that stuck with me is when Johnny mentions abortion. I'm so glad he said that he believes you should terminate a pregnancy if the child has that diagnosis. People need to listen to that part, because he had to live this life. It's cruel to knowingly have a child whose life will be nothing but pain.
I didn't read up on that cure/treatment that he spoke about at some point... But if it is good enough to give them a good life now maybe abortion is not the way to do it? at least not now.
It sounds so selfish not to, of course it would be hard but I couldn’t imagine bringing a child into the world who is doomed to so much pain.
There’s a chance my chronic pain could be passed down, so for me kids seem completely out of the question. I wish completely healthy people all understood this...
@Not This Guy Again I’m sorry but if several people with life threatening disabilities are saying it’s cruel to bring a child into the world with a disability where their life is basically just constant pain, then that should speak volumes to you.
Im pretty sure most people terminate a pregnancy just because they dont want a kid based on their circumstances not because of the kid going through pain and suffering
@Not This Guy Again .
The body is just a vessel, the heart just a pump, this mans spirit is as bright as any beacon I've ever laid eye's upon.
Well said👏
G W. I sometimes get the feeling that people like Johnny are being prepared for a higher spiritual purpose. Not to sound cliche but he must be an angel in training to weather this torment with such a powerful attitude.
You meet him in a parallel reality - any quantum state is possible.
@@humboldtharry4248 You could very well be right! Very bright he was - and is!
beautiful words:)
I saw this on tv when I was 14 or 15 years old, I’m 32 now and watch it every other year or so. Such an amazing person.
I wish I would have known Jonny personally (along with everyone else), but he was half a world away and I was only 21 years old.
looking at the comments , its amazing how many have seen this and return to see it again. Johnny is reminding us to never forget him.
I just watched Johnny's video. He passed in 2003 and even tho it's been 17 years since his death, he is still an inspiration. God bless Johnny and his family
When I first saw this I just had my daughter and when he passed my daughter turned 1. I'll never forget you Jonny Kennedy 😇❤
TO laugh and joke while you’re getting your own coffin made takes an incredible type of person
Death is another part of life
Jimmy B.S. Roastbeef as WE know it
It's not even a happy thing weirdos its whether you know jesus or not.
Right!? What a pure beautiful soul
I think if u dont joke about it, it Will Be 2 hard.
I have never heard a human be so humble and at peace with his journey,,,,fly high Jonny i know your everywhere
I have found myself watching such stories randomly whilst I was dipping into depression and it is amazing how the courage and drive people such as Johnny have made a difference of telling myself try each day pick yourself up it's going to be ok. He's such a remarkable person...
Same
I do the same, except for me, I watch to remind myself that there's always someone else in more pain than myself. I have a condition in my brain that is proving to be inoperable, after 3 brain surgeries attempting to treat this condition. I was told it was potentially inoperable, but I chose to attempt the surgeries anyways, and they all failed. So I'm in a lot of pain every day. I get depressed as well, and I watch these documentaries to remind myself that even though I'm suffering, there are so many others that are facing death, and they do so bravely. So I put my faith, and my life, in God's hands, and I get through the days the best way I know how. Some days it's one hour at a time, some days it's one second at a time. I hope you're doing well today!
💙 Megan in North Carolina 💙
Sometimes random things are just what we need to help us through another day. Pops libra I hope you’re doing well
@@MaddiesMamaRN My thoughts and prayers are with you. My fears feels for you. I have several autoimmune conditions which destroy my organs and severe spine issues. The pain is constant and excruciating, the depression deep. Have been like this for over 6 years. I am alone.
Came across Johnny's story today and it taught me a lot about humility, endurance, courage. I have always been strong but must admit that lately the pain and what it has done to my life has taken its toll!
Johnny's story has given me a new ray of light out of this darkness.
I pray for comfort and peace for you. God is with you.
A very gentle hug.
Mercedes in Virginia
@@mercedesprecht-matuschek6026 I'm hugging you right back! 💙
Forgive me my Lord when I complain about situation.
The mother is queen how she takes care abou her son and this brave boy, no coment....Johni we have to learn from you....💗
Amen forgive us I hope you doing good May the Creator gave us strength and courage to face it for any situations we face will be wait for us support and unconditional love.
He does 🤗
Yes...
😂😂
He lived 36yrs in a pain wretched body and still accomplished so much. Sixteen years later and his memory lives on as strong as he did. A story like Johnny's will humble you & remind you that when you think you've got it bad you need to think again.
your last sentence - yes precisely! my wife asked me why i'm watching such a sad, drab documentary. i told her straight away that it's making me appreciate what i have.
M H what would be the proper way to feel while watching this then
M H I hear ya, M. Thanks for taking the time out of your day to share this viewpoint. I really hope you’re doing well
@M H Not one person said anything the way you made it sound. I'm sorry that you have to deal with what you have going on. That's called compassion, not oh woe is you, I pity you kind of thing. I too deal with severe health issues so when I see someone that has or had something worse than myself it's a reminder that I don't have it as bad as I think I do. You really shouldn't take what ppl say out of context!!!
@M H I don't think she was implying it's good for "normal" folks to say thank God I don't have that mess and then go about their day. I think it was more directed at people who are depressed or feeling sorry for themselves or just being negative and telling them to try and snap out of it and realize how good they actually have it, many people have it so much worse and they need to appreciate what they do have. You could use anyone's life experience who has struggled, not just the disabled, as an inspirational story to motivate people to see the positives in their lives and that is what she meant, not what you're saying. Even though I suffer now in life, his story reminds me that I need to be brave and keep pushing forward because he had it so much worse than I do and he was brave. I wish I had gotten to meet him, what a wonderful inspirational man! And he was pretty funny too!
define Jonny Kennedy
Jonny Kennedy
(noun)
A person of high esteem who inspires and teaches long after their time. A legend or hero known for greatly affecting the lives of people in a positive way.
What a brave and awesome dude with such a good personality. His mother’s face, the terrible grief, and also the relief that she did as much as she could and loved him as much as she could, and that he is no longer in pain. 😔 “I’ve got a dodgy shell” he says. Sense of humor through so much. What an amazing person.
I hope I get to know this dude in another life
I'm sure you will. ^_^
T s,,, you will sweetie!!!!!! All of GODS PROMISES ARE SET IN STONE AS IT IS WRITTEN. I HOPE TO SEE ALL THERE. GOD BLESS
I think we all do. Truly remarkable man.
yes me too. Such a nice guy wish I had known him
I don't believe in it but I wish him in a better place , a better life
"It doesn't mean anything, but it'll get them talking."
Racist!!!
@@theproudpinoy1015 what
@@ianmills6260 Didn't get that either... Proparbly a Boris Johnson fan, climate change denier, potential Trump supporter, flat earther and overall troll. In Germany we have those, too.
Dunning-Krugers from mount stupid.
@@philippschmitz1787 Jonny literally said this while they were talking about the Heinz label on the casket.
I just cried watching the bandages being changed.
This guy is more of a MAN than many who claim to be such.
What a a wonderful Man.
I hate to admit that I was a coward watching this poor soul having his bandages changed - I couldn't watch it all. I bawled my eyes out for him. My god what this guy had to endure was so cruel, but I'm glad that he had such an amazing family behind him.
I’ve spent a lot of time on the internet from being unemployed and mentally unwell. Far too much more time than i care to admit. I’ve watched every documentary from A to Z but i have to say this is one of the most emotionally profound ones I’ve ever seen. His attitude and outlook are incredible and i envy his acceptance of death
I've had trouble the past couple years with depression. I started therapy about a week ago. If it's something you can afford to do it makes things so much better.
@@willgetbettereventually124 i had therapy for a decade growing up. It doesn’t do anything for me other than provide a person to vent too. I’m finally trying out medications. (SSRI’s) now. Hopefully that works. First one i tried didn’t do anything. Just started a new one last week. Fingers crossed
@@Memphis_ritz 🤞🏾
@@willgetbettereventually124 indeed. Thankfully my wife is a surgeon. So I’m in good hands and she’s helping me figure out what meds to try. It should be 6-8 weeks (again) before i know if it works. They warm you up to them slowly to make sure there are no major side effects so it’ll be a couple months of trying it and adjusting dosages before i know if it works.
me too, matt. been through a lot, mentally unwell and scarred, on meds. but that documentary was one of the best ones i ever watched.
i'm trying to adopt this mantra: death is not the opposite of life, it is the opposite of birth. life is eternal.
It just just really made me cry seeing him cry out in pain when his mother was removing his bandages and in the next second apologizing for what he said. He was such a humble and brave man. I'm glad he is no longer in pain.
Same here 🙋🏻♀️💔🥺😢♥️
I know that was the hardest part to watch! My heart broke!
I agree. The most gut wrenching part of this was hearing that interaction between him & his mama💔😭. What a sweet gentle soul he was💞
I feel like this documentary should have done better . More insight on the illness and more explanation on how he died and why he was so sick on the last days (Maybe I'm dumb and they said it and I didnt got it I'm not from native english speakers countries)
Anyways he's a great person with a lot a courage , seems that nobody thinks at that but you need a lot of courage to decide to die. Death is frightening , the uncertainty of what it will be its scaring af, the jump to the obscurity , the fear of the unknown. I'm not good in english but it needs a pair and he has , not only just to live a life of physical excruciating pain , limitations , frustrations etc but to jump into the unkown, decide to die. He also from this vid seems he affronted life with sarcasm and a witty personality, without whining like many 1first world people I see do on the internet for stupid things . He had an intelligent view of life Bless his soul
@@disclose_beauty He got cancer.
Before my father died, he said with a twinkle in his eye, "When people come to the funeral home to pay their respects I'd like a recording of me saying "'Thanks for coming to my funeral. I hope you enjoy your time.'" (Or something to that effect.)
Were you able to play a recording at his funeral?
@@rachelgonzalez8051 No, he never recorded one. I'm sure he was just joking but it would have been kind of neat if he had!
It reminds me of a video I saw a while ago. I believe it was from Ireland. A guy made a recording before he died saying “Hello? HELLO?! Get me out of here!!” Which played the moment his coffin went into the ground (as far as I know his family was aware he wanted to do that). I’m sorry for your loss! But it is a great way of knowing that someone has accepted death instead of fearing it 🖤
@@NewGothOnTheBlock I saw the same video of the Irish guy and his recording. I was going to say something about it too and that I think its an awesome idea!
What a character 🥰 the world has lost an amazing beautiful intelligent man 👌❤️
Life can be so unfair
Jonny is such an inspiration for someone to have been dealt with such a bad hand in life so to speak yet he has such a bright, beautiful and pure soul. In that way he was truly blessed and like he said his suffering cannot just be for nothing as there is a reason for everything in life.
RIP Jonny and hopefully we see you again in another life.
As someone with chronic pain, I often wonder how I could cope with living every day of my life in pain for the rest of my days (I'm only 25)...and this puts perspective on it.
Very true I also suffer from chronic pain and severe PTSD. I tell myself if Jonny can do it so can I
"Such as constant wanking." LOL. God bless him. He was such a character. I hope he is happy and pain free now. RIP Jonny.
@Bartek270 Because he made a joke that was funny. What is wrong with you?!? 193 other people got it. Apparently you did not.
He can't be happy or pain free, he died
@@Sheltieshangrila don't even give trolls the time of day. I know what ya mean. 💖
Anyone who doesn't realize he's now pain free and happy, has never been in pain.
@@micusferreiro3789 your disgusting. he was living with a condition that made him have to have his skin torn off everyday and now he doesnt have to suffer. ofc hes happy and pain free now. death was what made him happy. rip jonny
His spirit was a hundred times stronger than his skin failed to be. Go, Tiger, defying the laws of gravity.
This Mom is phenomenal. That's why Jonny is strong.
The changing of his bandaging... oh my God I'm in tears
Dude was a wordsmith. When butterfly-woman was breaking down, "this will be history" "you're a part of history". Just damn... making HER feel better
GhiaDon7 what’s a wordsmith
He spoke truth
@@braveheartedme7855 means he has a way with words. He is good using certain words and putting together something with humor or something to make others feel better.
Honestly, I don't have any chronic illnesses. My depression has been getting very bad as of late and my suicidal thoughts have been getting even worse. But...seeing this documentary really made me think. It makes me realize that so many people are suffering. So many people need help. I want to do something more in this life than what I'm doing now. Johnny made me realize that. He made me realize that even if I have something horrible in my life that I can STILL keep going and keep my head up just like him. He's such an inspiration and I'm so sad to have seen such a beautiful life been cut far too short. I wish I could thank him personally for all that he's taught me, but that isn't a reality. The only thing I can do is live my life and keep him in mind. I'm so glad I stumbled upon this extremely humbling documentary. This was genuinely a lifesaver for me. I'll try and do the best I can in my life for Johnny and myself.
Linda Holt You’re such a dear. Thank you very much. I appreciate your kind words.
Unfortunately, depression is a chronic illness for a lot of people.
:(
Dango Daydreams If you ever feel down, reach out to someone, including me. I'm glad that this documentary helped you see that even though life really sux sometimes, it could be soooooo much worse. We are here but for a very short time. Much HUGS to you!!! Remember, you are LOVED!!!
I really hope your SI thoughts are getting better... that's such a scary thing to deal with.
I have chronic depression, ocd & panic disorder. I completely know how you feel. Just manage one day at a time and remember that so many things can change in life.
You never know what other people are dealing with. This was hard to watch. Imagine having to live it for 36 yrs. Tears at the end when his Queen song came on.
Words cannot express my admiration. What an example for us all…we’ve never a right to complain when you see his strength. Fly high sweet Angel 👼
Imagine how his mother having to change those bandages! Putting your child through pain he has to go through to continue to live! So sad!
Chelsea Jennings
Yes... horrible just like burn victims in the hospital... I knew somebody who used to change bandages decades ago in the hospital and he said the burn victims would start screaming when they saw you coming... how sad how really tragic
gardensofthegods how sad,how so so sad. I wouldn’t have been able to do it
Once a week for 36 years.. That women was extraordinary.
46:55 that breath his mother takes seems to be a mix of pain, relief and peace... what a brave lady...she finally rest from seeing his boy suffer for 36 years...
True
I've been through it. when you're surrounding a loved one waiting for them to pass and they finally do, it's bittersweet. You're happy they're not suffering anymore, but they've left this earth and you'll never see them again.
It's now August 15, 2021 and I just stumble upon this Johny was such an amazing and special person RIP thanks for sharing apart of your life journey I couldn't hold back the tears watching him getting his bondages changed he cried in pain and then apologising for what he said he was such strong person
I remember watching this on cable as a young child and it actually scared me so much and now I'm watching it again so many years later and it's just so bittersweet
"I could see right down that t-shirt when she bent over." This dude was hilarious!
Lol this dude is a pimp
@@amd-bu2mf Was, you mean.
@@dyztroyax4628 his spirit will last for eternity
creep
@@nunyabiz6532 troll
Just from this Documentary he seemed like a funny guy when he was here. his jokes are hilarious. when he's talkin about his disease he says "any friction, so like wankin too much" such a funny man. hope he's doin alright up there.
Lance Smith, If heaven is full of idiots like you I'd rather go to "help" anyway.
Lance Smith Piss off
Lance Smith God has abandoned us
Lance Smith I said US. We are killing our planet, our selves all in the name of God. He has abandoned us
Lance Smith I will not read a book that has been used to kill. To kill other religions, people who love a diffrent gender.
“I look a little different than the norm, I don’t know who Norm is but I look a little different than ‘em” - reminds me of some throwback Dangerfield. Great one liners all around.
I remember watching this as a kid. Over the years I've tried to find this documentary but couldn't remember exact details. So glad I found this.... what a beautiful soul.
All I remembered was inside out skin (I thought) and baked beans on the side of the coffin😂 sounds like the baked beans did their job!
I believe death was okay with him. Because in this life he felt so much pain. And he's probably been ready for long time.
I agree.
Agree
His real life just started!
but beautiful how he looking forward to every minutes in his life
I think that god has plans for him for the after life what a person so humble so strong RIP Johnny
What a sense humor though! He said like constant wanking...skin falls off. I lost it. I wish i knew him we would get on great. I have a disability and i am the same way. If you cant laugh at your disease who can?
kither04 I just read that as he said it loll
kither04 Just asking whats your disability
me too ahah
i honestly had to stop the vid because i was laughing so hard
kither04 me too, constant wanking has been a problem for alot of us but none have spoken so eloquently of it as him
What an incredible story about Johnny who celebrated his life to the full and even planned his own funeral what an amazing man
I remember watching this in high school when it first aired. I believe this was like 2004 or 2005? I remember his sense of humor being unforgettable!
"I was always a crap singer."😂I love how he still had humor and he didn't think of death as a bad thing. He accepted it.
I agree
I had to listen to that twice to see if he really sang what I thought he did. Very keen sense of humor!
Accepting something like death or the death of the loved one is the only way to living the rest of our lives without fear or guilt or sorrow.
Connorade death isn’t much I died three times and honestly I never had felt so rested when i came back was in a coma and was no sense of time but was very refreshing when I woke up I understand where he’s coming from about death, it’s the family that suffers. What a awesome bloke he was
Makes me question my life and what I'm waiting for. Half the time I'm scarred to jump outta my safety bubble and worry about failure, success, health, family, friends, work, school, ect...this makes me realize I'm waisting away my life worrying about nothing that will matter in the end.
I don't care we are all like that don’t worry...
So true
@@durandyoan2913 but you should worry...you could be so much more
DURAND is right we are all like this but i do worry, i feel like when i watch something like this it helps to ground me and have a different perspective and above all else be more thankful.
Every man dies, not every man really lives!
This poor guy, I have been feeling sorry myself the past few months with my delimma.. he really lived his life. Maybe I came across this video for a reason. Johnny you were amazing!
he has the wisdom of a 90 yr old and the liveliness of a 6 yr old, and i love it, makes him really special but kind of an allrounder, cause he can talk with everyone every age on the same wavelength. he even looks and sounds something between 6 and 90. such a kind guy. i think he could help me (and other people clearly as well) a lot, i suffer a little bit of depression and i wish i only had 1% of his positivity and strength.
I love the way he explained life. "...Earth is just a classroom..." That just resonates with me so much.
As little sense as it makes I can see how.
I lost my 42 yr old son just 4 months ago. This video has helped me to feel so much better. Thank you Jonny and God bless his Mom and Brother.
My condolences mam , may your son rest in peace .
i’m so sorry for your loss. i hope you find yourself at peace. i know for a fact he is in a better place 💗
Omg! Im so sorry! God bless and hang in there!
I'm so sorry for your loss- When I lost my loved one looking up near death experiences really helped knowing they're in a better place. God bless you💜
That’s not such a bad age. At least you got 42 years of joy. I’m jealous. Your son is at peace now...
I lost my 31 year old husband to suicide on February 28th 2021 - he was only a baby. My future died alongside him when he hung himself.
Its a pity that there are still people living and don't understand nor comprehend what life is about as Johnny said. Lets live with love and caring for one another forgetting about our shell, our soul is what makes us larger than life. Johnny comprehended and understood it, he was a beautiful soul. RIP Johnny, now you are an angel.
Seen this documentary more than 10 times now. There's something about Johnny which make me want to watch it over and over again. He's very inspirational, brave, witty and funny. Rest in peace and may God bless your wonderful family, friends and community.
I agree, Johnny was a warrior!
Wow, even when he knew he was going to die very soon his spirits were still up. That's incredible. RIP Jonny.
Mar Mac - as someone with an excruciatingly painful disease, I can understand not being frightened by death. When you're trapped in an inescapable hell in the form of your own body day in and day out, after decades of suffering, death doesn't really sound all that bad. I'm not saying that everyone with severe chronic pain is suicidal, rather that we don't live in fear of a death that will free us from the body we're trapped inside.
Cassie C Yes, my mom who never even took a painkiller after every of her several back surgeries at the end gave in bc she was in so much pain it didn't even matter that she wasn't going to be able to talk afterwards. I could not only not touch her, but couldn't even get close to her body or she would wince in pain even being knocked out on a lot of painkillers she had absolutely no tolerance for.
She hated pills. I know how much pain she was in just deciding to take them at that point. Once you are at the end, once you start taking those meds and you get that IV......you normally will never speak to them again. It's not the same as a coma. I felt her gone before she died.
Yes Cassie C that's exactly how I feel.
Those were days I had Mahatma Kane Jeeves....and my son would stand at the foot of the bed and tell me "hugging thoughts mama"
@@thecraftycyborg9024 I hope you feel well today and I am so sorry that you have to live in pain. Your cat looks like a sweetie and you're beautiful
his frustration after dropping his hat completely broke my heart. i can’t imagine all he’s been pushed through, he’s so incredibly strong
Yup that got me right in the feels
Same here 🙋🏻♀️💔💔💔💔🥺😢 I’ve cried laughed and then cried some more watching this he was amazing!
@@rachaelkeach24 me too 💔🥺
That random “I can see right down that t shirt when see bent over” at 11:52 floored me, and again at 13:22, he had a better sense of humor than most people. That woman he was talking to was so sweet to him
I'm not much of a review writer over YT but this documentary was just magical, he was just such an amazing person I have no words to describe how moving and how touched I was from his story. RIP Johnny you had a very meaningful life, hope god have you in his calming arms!!!
I woke up yesterday morning limping, holding back tears because my arthritis is painful. Later, I watched this video. This morning as I limped out of my bedroom I am grateful - my depression lessened for sure. This man and his family are an inspiration and helped me put things in perspective. Thank you for sharing this video.
❤
I felt exactly the same, arthritis is horrendous for people that have it and no one can really see what's the matter... but this man's will was on a whole different level.
Another RA patient over here! Yes, its terrible ...painful, exhausting, expensive... but if I compare RA with EB arthritis is a dream...
I can relate to you so much! Have two different types of rheumatism. Tietze syndrome (long story short: Rheumatic ribcage) and Fybromialgia. Also have days when even waking up is painful as all heck.. and the simplest of movements are a struggle. But indeed, looking at stories like the one of this great MadLad (narrating yourself and saying “that’s me in that box” before you die is beyond great”) cheers me up a lot. I don’t know you personally, but if you (or anyone with similar situations) ever want to talk just add me on IG 😊
Look into borax research please. A Australien found out that the lack of bor is connected to arthritis. He sold it to cure it and wanted all people to know. Then he went to big Pharma. They realized they couldn’t make any money anymore and hide the effects now. Look into it
RIP Jonny Kennedy, I dont know you but I miss you already
Kay Kay me too! I wish I had known him. I hope I get the chance in my next life or heaven.
@@amandadulaccoughlin6243 i dont miss him
@@juustopuuro7297 Because you miss your Uncle Daddy playing polka pump in your schnack smacker. Just like his Bro-Uncle did.... you know how you inbreds are.
@@coaltrain UK burns are funny, polite delivery of an epic burn
I liked that this film wasn't scripted at all. Jonny had a wicked sense of humour, an incredibly compassionate heart, all the charisma a don juan needs, and his goal in life was to help others with his condition
I do not feel pitty for this lad. Only respect.the embodiment of what we in America call a badass.
Edit: im watching this again.. its necessary for me, because there is waaay to much, on a few different levels to absorb about this story
By christ what that man endured. I personaly dont recall ever seeing or hearing of anyone suffering to this degree.
His singing absolutely cracked me up!😆😆😆
🎶 19:44 "I never knew all the words. I was always a crap singer."
🎶 20:03 "Never enjoyed the Harvest Festival."
😂😂😂
😂
I made it through the whole documentary without crying...and then the curtain closes and I lost it. What a way to leave. He was such an incredible human being. And that Queen song...seemed like just the perfect song for him. May he rest in peace.
I cried already in the beginning when he started over that Heinz logo on his coffin :D
I was so interested in his story. Such a brave man to endure his suffering for so long. He gave us all food for thought. We are all here to learn lessons of all kinds before we depart this beautiful world and our spirits lift Heaven ward. I thank him for sharing his story. He was an amazing spokes person and promoter for finding a cure for his illness. One could say he was a hero. God bless his soul. And God bless his Mom and brother and friends.
I took care of a patient with this disease and it's truly horrifying. The skin forms huge blisters and it never ends. What an incredible will and fortitude to live with this disease in such a positive attitude.
What an incredible human being Johnny was. This is very sad but also inspiring to me. He not only had the will to live every minute he had but was willing to be ok with dying. He did both with dignity and a great sense of humor. You’re home Johnny, God Blessed us through your presences.
PS- He’s still making people laugh almost twenty years later. I think he’d love to know that.
I think without his wonderful sense of humor he wouldn't have lived as long. What a wonderful man!! I am glad he is free from his defective earthly body and now roaming beyond the veil in peace and comfort.
Oh yes i can just see him when i close my eyes❤
Coming back to haunt people every now and again, going a little poltergeist for a laugh.
Megan Smith he could be like Casper 😄 friendly ghost..
Your life mattered john .
You showed millions of people what bravery is.
What decency is.
How a man should conduct himself.
How to keep it together when things are truely awful.
What a gift life is.
We have never met but im sure we would have been friends.
Peace out irish john.
john doyle you will meet up with Johnny on day 😃🇦🇺
Cheers!
Same. Thank you for saying it, so succinctly and beautifully.
I never cry at funerals. But for some reason, this one hit home and I never even knew Jonny. He had such a beautiful spirit. RIP.
What an inspiration he still is 20 years after his death.
That part where she's changing his bandages my heart just broke. Such a beautiful soul having to suffer so greatly. I'm glad he doesn't have to suffer anymore 💜
It's very difficult to deal with.