83 year old Darwin man John Baylis died from the ravages of Motor Neuron Disease on 5th March 2015. He wrote Imagine if you can, a good mind, with good recall and an active imagination, trapped in a body that can’t walk, can’t talk, both arms and hands affected, lips, and throat not under control. Difficulty eating and drinking. It is an awful place to be, believe me. The reason I have “ come out of the Closet “ is to promote and push for the right to die with dignity.
John Baylis’ Diary
83 year old Darwin man John Baylis died from the ravages of Motor Neuron Disease on 5th March 2015. This is an exact extract of his Facebook diary.
Dec 15, 2014 – Aged Care Assessment Teams ( ACAT ) I have finally been diagnosed by my GP , as having ‘ the monster inside me ‘ being diagnosed as Motor Neurone Disease . We applied for me to be assessed by ACAT , and they required a doctors report . My GP stated that I had MND . Fifteen years ago now , Dr Burrows of RDH made multiple diagnosis of my emerging symptoms . They were MND , small vessel disease , Myclophaphy and possibly Slow Person Syndrome , SPS. I visited a prominent Brisbane MND specialist three times , and an Adelaide specialist once , with no diagnosis . Now , I have to bite a bitter bullet , and accept that my symptoms fit MND , and Dr Burrows was probably correct initially .
The reason I have “ come out of the Closet “ to coin a phrase , is to promote and push , for the right to die with dignity movement , or Voluntary Euthanasia for the terminally ill .
Younger people reading this , barring accidents , will get old and decrepit , like I am today . They will then , desire the right to die with dignity . It will not be there for them then , as it is not there for me now , unless they join the fight , for the right to die with dignity now .
Imagine if you can , a good mind , with good recall and an active imagination , trapped in a body that can’t walk , can’t talk , both arms and hands affected , lips , and throat not under control . Difficulty eating and drinking . Just take a moment please , and really put yourself in my position . It is an awful place to be , believe me . Many places in the Western world are enlightend , and provide exits when they’re needed .
What then , do I have to look forward to ? palliative care ? that scares the shit out of me . Can’t eat ? so they’ll feed you through a tube , can’t drink , another tube . They will save your body without dignity , but what about the healthy mind that is trapped inside , until it escapes the efforts to keep the body alive , by dying .
We all recognise that a suffering pet , should be put out of it’s misery . What about us , we should be allowed to exit painlessly , when it is no longer worth staying alive .
Voluntary Euthanasia for the terminally ill should be everyones right . Damn Kevin Andrews to hell .
Voluntary Euthanasia for the terminally ill should be everyones right. Damn Kevin Andrews to hell
Dec 18 – This comment goes back to April 2010 , when I was diagnosed with lung cancer . I was a heavy smoker , only stopping after cyclone Tracy . I was put on a 6 week course of chemo and radiation . The chemo was Cisplatin , and Vinorelbine . I posted somewhere , that I was originally diagnosed with MND , by Dr Burrows of RDH . He’s still there . MND usually kills within five years , but some cases are recorded as twenty years . Mine kicked in with early symptoms approximately fifteen years ago . See comment below . In April 2010 , I could still walk , talk , shower and do nearly everything . If I fell , i had big trouble getting up again . In retrospect , the monster lived in my right arm , I always had pins and needles sometimes so strong it would hurt . Presently , that is happening now , to my left arm . ” I’ve said all that , to say all this ” .
Incredibly , after two weeks of my chemo , my MND symptoms simply went away . For the first time in years , I trotted up stairs without holding on . Rolled on the floor with my grand daughter , and got to my feet effortlessly , The reversal of my symptoms lasted just over a week , and then slowly , my symptoms returned . None of the doctors I’ve told this seemed interested , but I thought if I posted it , maybe one day , it might lead to research , combatting MND >
Dec 20 – I am John Baylis MND sufferer . Have a look at my profile , and imagine the monster inside me , is inside you .
What can I say , that we have’nt all said before , only this , ” spend some time , with a monster inside ” Lyle Shelton . How can they alone , know God’s will , or even if there is a god .
Spend some time with a monster inside Lyle Shelton. How can they alone know God’s will, or even if there is a god.
Dec 21 – OMG , Kevin Andrews has been promoted to a ministry . VE prepare to defend yourself .
Dec 22 – Yes , I definitely look like shit
Dec 24 – To ALL of the wonderful people , that have given me support in my hour of need . Thank you all so much . Johnny Baylis
Dec 25 – Well , Xmas is nearly over and I got to see family and friends once more . That was a good thing .
Dec 26 – John Baylis I did exactly like Krissi Besic and others have said , I waited too long , letting others fight for this Voluntary Euthanasia to be made law . Discriminatory politicians , make their policies on VE , following the religious lobby , all the time knowing , that if needed , they are wealthy enough , to fly to an enlightened country and use the ” Dying with Dignity ” program over there . As Philip Nitschke pointedly defended himself , saying , ” why should only the wealthy have this option ” Kevin Andrews is only one of the litter that shelved the NT’s Right to die legislation .
Discriminatory politicians make their policies on VE, following the religious lobby, all the time knowing that if needed, they are wealthy enough to fly to an enlightened country and use the ” Dying with Dignity ” program over there.
Dec 28 – I tried to go easy on the monsters progress over xmas , It’s an unpleasant subject for the festive season , but it has beaten me , if I stop facebooking , please understand that I really appreciated all of the support I have been given by facebook friends . If I don’t “like” or answer comments , it’s because I don’t feel up to it , and not because I don’t care . Make bloody sure , YOU NEVER EVER get in my position .
Now is the time for you to get behind a Voluntary Euthanasia program. We have the numbers, all we need is the will.
How is it we never see an Ad on TV regarding VE ? Has anyone tried ? Is it being blocked ? 80% for VE is way too many , to be blocked by a few religious extremists in government . Because of the monster , I will not not be able to carry on much longer , but remember please . You will all get old and decrepit like me one day , The best time to fight for what you want , is now .
Dec 28 – This is a real bad day for me , possibly the worst yet . I have deteriorated more overnight , my poor family are doing it hard . I so wish for a peaceful exit . VE if established now , would have eased my suffering . Make sure it’s there when you , or your loved ones might need it .
Dec 29 – It has to come , but sadly , I think too late for me.
Jan 1 – I’m hitting the bottom of the barrel today , Got to hang up guys ,thank you all , and may Kevin Andrews and all religious extremists rot in my hell
May Kevin Andrews and all religious extremists rot in my hell.
Jan 1 – I see on TV today , where a valuable baby Rhino was euthanised at Werribee , Melbourne . They said it had an infection . The infection may have caused pain and suffering , it may also have caused death aka a terminal illness . That is such a nice civilised thing to do , and the people making the decision should be commended . BUT What about me , and the many others ?? Are the people making the decision AKA Kevin Andrews religious extremists to be commended or cursed .
Jan 2 – bad day yesterday OK . Fell twice , more skin off but nothing fatal , frown emoticon worse luck .
Jan 3 – the mmonnster gojftm y han xd noaw mivght losze my fb friennndddddddddddddddzs so sorrrrrrrrrry i cant go peacesfulmllyg
Jan 4 – still tell me any neeews and dont always exppectt answwwers xxx i can manage srtill but editting is too harrrd . i want all thhhe polliies VE checkkked for their vote, and their answers on facebookkk . Please
Jan 4 – The m on szter is too smmmart it hhas taken my in dex finnger ojuuft now . mmmy typing fi nnger
Jan 4 – John Baylis
2 January at 14:32 • Edited
I want to explain to Kevin Andrews and other politicians . what MND really means , I don’t think think he has a clue , which makes him dangerously stupid when he disabled the NT’s Right To Die . Now he’s Minister for Defence . Let me explain a tiny part of my suffering to you Kevin Andrews .
I wake early morning , still dark , to go toilet . I wake my wife by making non understandable noises , she has to lift me into a sitting position on the side of the bed , she hands me the pee bottle and helps me use it . Stools are more undignified Kevin & co , She waits , however long it takes , and then wipes me . Do you think your wife , Mrs Andrews , could handle that OK Kevin?
I slept OK , thanks doctor for the sleeping pills . She helps ……………………………………………………………………………………………………..
This bit is corrrected big time .. Thhhe part comment above I wrotte bbeforrrrrrrrrrrrrrre the monster got my hand . It will never be finished now . I wont wwaste it though , I’ll post it ,, I’mmmmm reeally ouut of the closet now i reckon
Jan 5 – How can they do this to us ?? IIt’s inhumane and so blloody cruuel . I’m suffering so badly ,,, I dreeammm of relleeeease .
How can they do this to us?? It’s inhumane and so bloody cruel. I’m suffering so badly, I dream of release.
Jan 5 – Carlene-Baylis Webb
I’m signing because my father is suffering. He is in his final stages of Motor Neurone Disease. It has slowly taken everything from him, his dignity, his mobility and now he is unable to communicate with his loved ones. He can hardly eat & drink, palliative is NOT an option he wants to die peacefully at home with his wife and children supporting him in his plight. He wants to end this suffering he is being made to endure and advocates the right to die with dignity. We love you dad XO
It has slowly taken everything from him, his dignity, his mobility and now he is unable to communicate with his loved ones. He can hardly eat & drink, palliative [care] is NOT an option. He wants to die peacefully at home with his wife and children supporting him in his plight.
Jan 6 – whatss onn my mind , is a pllacce to rrrreeeeeeest in peacce , oothers hhavve been throuuugh thhis , annd it is horrible . Why am i going throuuugh this ??? Just bbecausse somewealthy self importtannt relligiouus extremists in governmmxennt arre stopping me from ending mmy life peacexfullly at home wziithh ffamilly and friennnndds . kevin andrreews will be ever rrremexmmmberrrrexd for the sufferihg of ppooor bastarrds lliike mmex .
Jan 6 – I am starring in my own horror fiklm , brrreakfast this morning was two weetbix wiith jjust enouugh mmmilk to mmakex themm moist . like this they stiick to mmmmmmmmmmy special crooked bennt spoon designed to assit loss of wrist rotatin ,, which i hhave . my wife covers mme with towels to protect mmy shirt annd shorts which she dressed me innn bjefoore . no good ,,, ,i look like a battlefielld , so she cllea ns me up and p huuuttttts cleeeeean clotheessss on mme . well that wwas b rrreekkkfaast . how do ybu copke with that Kexvin Andrreeewss ?? pls xcuse. Oh i forgot a bit ,mmmmy rght armmmm is unable to mmove above mmy waissst , but mmmy righhht hhannnd a bit useable .. mmy lxxxxxxeft arm i ccccccccan use a little but my ha nd is bad finger and thummb dont opppose and no ffeellling in fingers . how i eeat , gget foodon sppoon wzithh righhht hhhnd and lilftc hand and spoon wivtth back of mmy lxxxxxxeft hand too bloody scccåry .
Jan 6 – WHY DO WE LET THEM DO THIS TO US . THEY ARE TORTURING ZSO MANNY PEOPLE . EVEERYONE THIN KS ITCCANT HAPP´N TO THEM BUT IT CAN . DON’T THHE GOVEERNMMENTTS KKNOZW HOOW WE HUURT ? I WANT OUT BUT THHEY ARE GOING TO MMMAKE MME SUFFFFER MORRRRRRRE . PLEASE MAKE THEMM LISTEN . I HURT INSIDE SO BADLY
Jan 6 – i’d llike to ssssssay i miss all you guuys i shared so mmuch with , but now things ha ve chang ed . so sorry you all knoow who you arre .
Jan 7 – John Baylis Stephen Bennett MP spend some time wzith my monster you healthy dont carre MP , and see wghat cchanges the b alancce even morrrrrre than 8o5% . If you dont want it m,,, dont use it .. but xdont forcce others to suffffffffferh orrib ly likkke i am atm If you agree to VE it means you ccare to hhelp terrible suffering you cant evven imagine , if DONT agrrree with V E , you a cruel bastard that does nt are about rrreal people , only rrelivgvious lobby grooups and party policiies . what will iit be stephen bbennett ? are you A cruuel bastad mp or o r do you havvve gutts to stanxd upand b e counted as a caffring human being ,
If you don’t want it, don’t use it .. but don’t force others to suffer horribly like I am at the moment. If you agree to VE, it means you care to help terrible suffering you can’t even imagine. If you DON’T agree with VE, you are a cruel bastard that does not care about real people, only religious lobby groups.
Jan 8 – I am not funnctioning pprloperly ,,,,,, what iindgnity now ..hhas thhe monster done Dammnnnnn you to hhhhell kkevin andrreewws
Dammnnnnn you to hhhhell Kkevin Andrreewws.
Jan 8 – feeling weirrd slouchingb in chair cccannnt thhiinnnk properly i’ll give fbbbbbb a rrreeest
Jan 8 – not good , whhy why do thhey do this to us why arrrex they doing it to mmme , thhrrrey arrrrrex so cruuexl ,,,,, ,,,,, I’mmmmmm prrrrrretty helpllessssssssss noow , dotheyb undderstnd what thexy are puutting us thhrouggh , it is absolutttely hhell .. i cant e ven thankk mmmy wiffffe , or tttxell hhe how much i love hmer . damn themmm , we crying ouuut for ccompassion , i’m cyiiingfor compassion ,,,,, but tvhexy dont listtxen they , kevin an drewss , are torturing us ,,,, torturing mme bbexyond what i cannnnn stand.dont let itv happexn to you ,,, iit not only withouut dignity , it is hypppocritial , callous , murderous cruuuuuuuuxellty . if therreex is a god and its kevin an drreeewzs god its a sadstic god . damn him dddammmnnnnnn him ddammnnnn himmm
Jan 8 – They force people to kill thxemsel vvvxes vlolxentlly, bby not letting thxxemmmmm dilxe zwiith dignilty .. is all about powzer . it coulld happxen to annny one of yomu latver on .. mmakkkxe surrrrrrrrrrrxe iivt doxesnt . it is hxelll bxxeyond bxellinef .
Jan 8 – switch off a wzhile fffeel rattshit
Jan 10 – the mmonsttter goot both hhha ndds nnow , allll fkkkkkiingers afffecctted i think iiitxsss trying to stop mecommuniicatng ,, immm msurrrrrrre ittts evil and intellliiiigent … what you reckon kkev in a nndreews ? cooould you hhhhhhan dlle this ,,,,,,, yoou cruuuell bastaedddddd ? oor would you pprrrrrrefffer to die wiiith dignkkkity
Jan 12 – monster so bad noow and can7t ans4wer all questions any mmorrre , two dayys no fb .clint annd Donald so good too us , Cllint cut doownnnn ttwoo biiiig ppalms neext to honuse ,,,,,, llllllllloove themmmmm booys . 60 n-oifications , ccant annswer ,,onlly llooooooookkkkk annd pick ,, sooorry .
Jan 12 – I havve lost my dignity over and over ,,, tthxe monstxer has almost finishxxxxxxxxxed mmme . It iiiis so cruuexl ,,,,,, una ble to ttalk wallk annd commnicate iiis impoossiblllllllle to,magin5e .
Jan 13 – i thik this my “la s t Post” thamk you all wondnerfull suppo rtner s of mys elf and V E , wheen i pass i’d like our kid s and grandkids to jhave dign/ity in death.
Jan 13 – ths is my l ast thank you t o all fb frˆn ds and support ers of mysef and VE , wh en i go , hope soon , hope too thha t V E i s t˙nere fomr our k/id s
Jan 13 – dpaugh ter k e ll y rea rr ang ed pc for m e . I c an t do much . but b epfore I’m finished propely i 4wannt to thank you a3lllll once again for increnblle support for myslf and VE . when i go keep fight for VE johnnyn bay…..ylis
Jan 16 – stil here ,, but only just i found new way to type veryhard for me to do better than nothnng cant read much or like but i try thannnk uou all John Baylis
Jan 18 – this is clear type for me , we made a short wand with large handle i can hold fairly well , and a rubber tip to select the right keys without trailing my hand over the keyboard , but it is extremely hard for me to hold it in my right hand and move my right hand / wand , with my left hand . i need many rests in this comment , but i wanted to highlight the suffering that we/I have to endure . imagine if you can , eating and drinking like that . since my last post , the monster inside has just about taken over now . both arms only raise to chest high , both wrists will not rotate . i have the weirdly bent fork and spoon to get anywhere near my mouth , then talk about a pig in shit , thats me . i have absolutey no dignity left , my poor wife does everything for , and i cannot thank or give her a hug . what a hypocritical bastard is our latest minister for defense . he has caused me unbearable suffering and i’ll die cursing him . once again , thank you all
I have absolutely no dignity left, my poor wife does everything for me, and I cannot thank or give her a hug. What a hypocritical bastard is our latest Minister for Defense. He has caused me unbearable suffering and I’ll die cursing him.
Feb 23 – Message from JB added here by his kids:
Facebook friends, I have reached the end of my journey. Talk to my kids Carlene, Clint and Kelly if you would like to find out any updates. Please, don’t forget my fight for VE!
March 8 – Finally, in words dad would have used…… DAMN YOU TO HELL Kevin Andrews.
Read the followup letter to Kevin Andrews, MP, by Ian Wood, in a separate Post