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I’m Documenting Myself Slowly Dying From A Rare Disease To Show Why Euthanasia Should Be Legalized
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I’m Documenting Myself Slowly Dying From A Rare Disease To Show Why Euthanasia Should Be Legalized

My partner and I have been documenting daily life with a terminal illness through Instagram without the filters and mushy inspo-porn. I’m brutally honest and open with my photos, revealing aspects of a disabled person’s life that you don’t often hear about.

I’m Holly Warland, a 27-year-old woman from Australia and I have a rare disease called Limb Girdle Muscular Dystrophy. LGMD involves the gradual deterioration of all my muscles from the chin down leaving me predominantly bed bound, reliant on care and basically living with a death sentence.

I was diagnosed at 11 but led a mostly typical life with great support from family and friends. I worked hard getting my Bachelors and Honours in Psychology and had planned my life around my doctorate; I wanted to be Dr. Warland by 25. I was halfway through my Ph.D. in neuroscience when I noticed my physical strength diminishing.

In 2016 I had to pull out of my Ph.D. studies as well as give up my beloved teaching job at my university. Every day I began waking up to waves of nausea, a racing pulse, sore muscles, hyperventilation, and uncontrollable shaking. My life was thrown into chaos. As my condition worsened, I found a real lack of true representation of severe disability. It seemed like every social media personality with a disability fell into the category of ‘inspirational.’ Worse still, the fitness blogs posting inspo-porn memes of amputees with captions like ‘GET AFTER IT!’ and ‘WHAT’S YOUR EXCUSE?’ Gross.

I couldn’t relate to that strong woman bullcrap, so my partner Luke (who is also my full-time carer and a part-time photo/videographer) and I decided to take some photos of my naked body and post them online so people could see the whole real story a disability has on the human body. The response I got was encouraging (and relatively non-creepy) and spurred me to share some more of the intimate parts of disabled life.

Most of the photos come with a backstory or a musing on an issue from my crippled point of view. Luke catches me at my best and worst; from fancy dinners to vomiting in the shower, nothing is sugar-coated. I’ve reached thousands of people around the world and have been given the opportunity to advocate for issues close to my heart.

What started as a way for a bored, bed bound cripple to vent her frustrations and clear the air on a few topics has turned into a window for those who may never encounter a deadly disease in the wild.

More info: Instagram

I wanted to show more of this darker and more honest side to disability, so my partner and I have been documenting my daily life

I have a rare condition called Limb Girdle Muscular Dystrophy. It involves the gradual deterioration of all my muscles from the chin down leaving me predominantly bed bound and reliant on care.

I figure if people are going to stare at me, make them laugh. I’ve always tackled things with humor and a sprinkling of pessimism. I know that doesn’t sound healthy, but it’s impossible to feel positive and ‘inspirational’ when you have a degenerative condition with no cure in sight. Things are literally only going to get worse. I wanted to show more of this darker and more honest side to disability.

Luke: a partner, a carer, a cat-wrangler. I’m convinced some philanthropist is paying him millions to make my final years the happiest they can be

This is Luke; my photographer, partner, carer, kitty dad, and an all-around incredible human.

He’s the one behind the scenes of every one of these pictures. He never leaves my side, regardless of my mental or physical condition.

I’m convinced some philanthropist is paying him millions to make my final years the happiest they can be. There is no other explanation because just look at him. He’s gorgeous, loves cats, and gives great massages.

I love him with all my brain.

I used to be unstoppable. I was halfway through my neuroscience Ph.D. specializing in ASD children’s ability to read facial expressions when my MD exacerbated

Giving a speech at a conference, pre-bodily breakdown.

I’m not humble about my achievements because I feel proud of the obstacles I overcame to achieve what I did

Presenting my Honors thesis (also pre-BB).

I’d present at conferences about my research, be on science panels, teach at my university, and write academic articles.

Now it’s gone. But I’ve realized I stressed my whole life over a piece of paper. I went straight from high school onto seven years of university. I worked my crippled arse off, and now I have no future to use my skills.

It’s hard to let go of your entire life plan but also oddly satisfying.

This photo was taken a few months before everything went downhill

I felt happy and healthy and had the strength to do fun things like go out to dinner or concerts.

As well as dealing with physical problems, I also had to come to terms with my loss of autonomy. I can’t be spontaneous anymore; everything has to be planned. People have to work around me and how my body has decided to feel on any given day.

I used to be well enough for a weekly walk

Now, it’s been long 4 years of hospital visits

My condition is so rare that when I tell the doctors what’s wrong with me, I’m often left with blank stares. It’s not the doctor’s fault; I just feel like every time I am there for treatment. I’m also a mini sideshow for medical students.

This is one of many hospital visits. But due to the freezing temperatures, they keep hospitals in I’m better off at home self-medicating. I can’t make my own body heat so you can cover me in blankets, but I won’t warm up without an external heat source.

Life in bed is not a dream come true

As aforementioned, I’m basically bed bound. I can get up periodically to go to the toilet or have a shower but it takes a lot of energy, and I’m often left gasping for breath. I know living in bed might sound like a dream to some but think about how bored you get after a week at home with the flu and just pretend that’s forever.

When I’m not trying to manage my pain or other physical maladies I’m watching TV, snoozing, or reading. Because of all the medication, I’m on; it’s very difficult for me to concentrate so I can’t even keep myself busy with writing or working online. I feel my once alert and task orientated brain is turning to mush.

Even showers can be tiring, but at least no one can see your tears

A shower for me is simultaneously heart racing and relaxing. I sit in a specialized chair and with my right hand can direct the water. It makes my heart race because I’m sitting up using strength to hold my back and neck up. Luckily the glass acts as a head and shoulder rest. But the hot water also relaxes my muscles, so it’s not an entirely negative experience.

This has nothing to do with nudity by the way. Luke caught me having a shower rest and figured it’d show another glimpse into the experience that is being Holly with the MD.

At the doctor’s; my second home

I had to have a difficult conversation with my doctor about how I’m petrified of becoming addicted to painkillers but need to increase my dosage due to my dip in strength and mobility now. I shed a few tears, and he calmly explained that because of my condition, I was only going to get worse and there’s no possible treatment, so I am kind of allowed to become addicted because there’s essentially nothing to lose. Of course, he said it more professionally; he wasn’t advocating pill addiction!

Tonight I’ll go to bed and congratulate myself for making it through the day. I can’t spiral

Pale, sweaty, and mid-vomit: a daily occurrence.

This day was quite sh*t if I’m going to be eloquent. This pic is mid dry heaving. Then 5 minutes later I’ll get the chills. It’s bloody miserable, but I feel so grateful to have such amazing medicine available and that Luke was with me through every part. He literally sat and read a book next to me while I went through the motions.

Every time I get sick like this, it makes me appreciate ‘normal’ days. I try my hardest not to let this affect me mentally. I can’t spiral.

I have had to come to terms with the fact that I will never get better and that I have to just get through each day

I like to think the expression on my face sums up how fed up I felt that particularly bad day.

We see a lot of pictures of sick people battling acquired diseases like cancer, but most of these afflictions either kill you or you ‘recover,’ so although the suffering may be great, it’s relatively quick.

We’re all brought up to believe in hope, and that life will improve, it’s hard to be in a position where that’s unachievable.

I’m angry at you. I’m jealous. I want your sh*tty life. Because you have a life. It’s hard to cry with tubes up your nose

Today I was just angry. Furious that able-bodied, well people complain about things in their lives. If you have a working body and mind, you can CHANGE things. So many people take their autonomy and body for granted. I can’t muster up sympathy for someone who doesn’t try. Who holes themselves up inside. You need to help yourself. Stop whining and be proactive. Lonely? Join a group that engages in your favorite hobbies. Unhealthy/overweight? Change your habits. Feeling down? Go for a walk in the sun.

I’m not trying to simplify depression or real problems, but YOU CAN CHANGE. I can’t. I’m stuck. I’m pissed off. My body dictates my day/life. I’m not inspirational when I tell you to get off the couch and stop feeling sorry for yourself. I’m angry at you. I’m jealous. I want your sh*tty life. Because you have a life.

I’m old enough to vote, drink, drive a car, and have a baby, so why can’t I control when I have a nice peaceful passing?

I have been given the opportunity to advocate for issues close to my heart. One of these issues is the legalization of Voluntary Assisted Dying in my state. The unfortunate reality for me is that this condition will eventually make life unbearable for me and I want a safe and reliant option to end my life when I am ready. I never thought this was an issue I would become so passionate about, but when I stopped to think about it, it’s my only humane option. I could wait until I die naturally, but that might be decades of more pain and suffering.

I work with a group called Dying with Dignity Queensland to convince and work with politicians to pass fair and merciful voluntary assisted dying laws.

Not all frowns and clouds

I’m a self-proclaimed crazy cat woman. They are the perfect companions for someone stuck in bed all day

I have two cats: Ragnar (featured) and Whiskey. They are the perfect companions that provide great entertainment and love.

Everyone knows how much I adore cats and all my birthday and Christmas gifts are usually cat themed. If I could work in an office, I’d be the lady with cat pictures and figurines everywhere.

Luke always cheers me up – even when I’ve had my blood drained, my pee stolen, and deadly x-rays blasted on my internal organs

Puns make life fun.

Still a little fighting spirit left!

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LiveEclectic
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

God damn. Thank you for that dose of honesty. You deserve to be angry at at all of us who live our lives without thinking you exist and who waste so much of our time feeling fucking sorry for ourselves. For what it's worth, I am certain your contribution to the field of autism will pave the way for many, especially in such a specialized yet crucial area. And your post has made at least one person re-evaluate their existence.You and Luke are amazing human beings who exemplify what it means to fight, and what it means to stand by someone unconditionally. Fight on sister, I'm so grateful that you are a part of my reality now. Thank you for this post, and as long as you're able, please continue to share your unique wisdom with the rest of us. It is a fresh taste of realness in a more and more out of touch world.

Natalie Parsons
Community Member
4 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

Carol Emory accuses people of not reading the post while NOT reading the post. Imagine that.

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Labrador
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

This post makes me want to get off my ass and do something, honestly this made me so much more grateful for everything I have

Amy
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Me too - suddenly feeling guilty for every opportunity I've wasted.

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diane a
Community Member
4 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

Nobody should be forced unwilling to continue on with a condition becoming utterly unendurable, no quality of life and which will only get worse. We are humane to suffering animals and should extend those same rights to people. Those with incurable degeneratve conditions should have the right to pass peacefully at a time of their choosing when things reach a certain point. I dislike the term Euthanasia in relation to people though. It has too much connotations on animals, who have no say" being "put to sleep".

Freya the Wanderer
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

To those who parrot the same old stale bromides about the value of human life, I say: Trade places with someone like Holly. Experience what he/she is going through. Don't judge somebody till you have walked from dawn to dusk in his/her moccasins.

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Noemie Hefti
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I have CRPS since 8 years. And I'm bedridden almost every day now too since the docs are taking my painmeds away and the disease is spreading further and further, killing me one day with multiple organ failure (unless I get killed by a car when I'm on my way to doctors with my wheelchair). I know how hard it is to shower or do daily things. How much strength it takes to even smile some days! And I have to say: I admire your bravery to show it so honestly and pure! You're a hero in my eyes! Thank you for that so much!! Also your partner is amazing! He's another hero! It takes a lot of strength from him too! And it just shows how deep his love for you is! Seeing that gave me back my hope that there are good guys out there! Thank you for this post!

Apollo
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I don't understand why your painmeds are taken away. It just sounds so awful that you don't even have the opportunity to numb the pain.

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Hseed
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I find this situation completely unfair. For me it's an easy statement: when your body is completely fine and operational, you get to decide if you want to jump off a bridge to end what you're convinced is a shitty life. Why this people, that are completely capable of making decisions, and have really good points to end their lives, don't get to decide? I would like to think my life is mine, but it seems is not that way. I wish this girl the best of lucks, taking this word with the meaning she wishes the most. PS: my father died two days ago from a similar situation. So I know what I'm talking about

Daria B
Community Member
4 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

I don't doubt you know what you're talking about. However, I'd like the raise the question: are depressed people really capable of making decisions, or is it really a crippling and deadly disease as much as cancer? Let's think about it. Usually cancer, when detected early enough, can be treated. That doesn't mean, however, that once you get rid of it, you're cured for good, as cancer can return. On the other hand, cancer makes your body deteriorate into a painful death when it goes untreated. All of these things apply to depression as well.

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Kelly
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Life is not fair. Me too (cancer, fighting, hoping) wonder why and envy a normal, simple life as it was before. I wish Luke, the cat and you all the best and I wish I could really hug you. Give us some of your bravery and spirit!

Lilly
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Heartfelt wishes that Luke (& other family & friends) are able to make your remaining days the best they can be. Good for you for being a fighter!

Bobbi Newell
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

As an Oregon resident, I fully support voluntary euthanasia, and voted for our Death With Dignity bill twice - once to enact it, and once again a couple years later to uphold it. We have the ability to extend life, but there are so many things we just can't cure. Palliative care goes only so far, terminally ill patients suffer horribly with few options as a result, and at that point the laws banning physician assisted suicide add insult to injury. I have heard every argument against euthanasia, including the one that it's amoral. To me, it's abominable to make a person live with daily agony knowing that they'll never get better. You wouldn't do that to your dog or cat, but somehow it's ok for the person you love.

Cassie
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

My mother took three years to die of cancer. Three long torturous years she suffered. We're willing to put dogs down to protect them from suffering, but we often won't allow the same for our fellow human beings.

BusLady
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I'm so sorry for her suffering, Cassie. It's always hard on the loved ones as well. You also suffered. 😢

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Bogawlagabreath
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I can't express how sad it makes me. You are supported by a beautiful soul. Love and peace to you and your soulmate.

Naomi Armitage
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Amazed by this woman's courage and thankful for her brutal honesty. WAY too many times, no matter what the situation, people try to sugar-coat it with all the "inspo-porn" (I learned a new term today!), and as someone who has several issues, this always nauseates me, too. What's wrong with being brutally honest and admitting that yes, sometimes life really does suck? At least in my case, I know my situations (and most of yours out there) will improve, so I have much less reason to whine than the OP. Just praying she eventually finds the relief and peace she desperately needs, and thankful she's got such an amazing man by her side (where ARE they growing these men, and where can I find one??).

Apollo
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I hate the whole inspo-porn too. Suddenly it has become a taboo to be anything else than extremely happy. Nobody has a life that's only amazing. Looking at all these fake 'I'm 100% of the time happy-pics' make people feel bad about their own lives.

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Rik Khaos
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Hi holly, my wife just shared this with me. I’m sorry to hear how things have progressed. I saw and imedately recognized you from a forum we both used to visit YT. I wish you the best and hope you are able to get the peace you deserve. -rik khaos

Molly Block
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I know how it feels to want something, and to work so hard for so many years, only to face that reality that your desire to contribute to our world and its people will come to fruition. It's a loss comparable to losing someone so close to you, suddenly. The best place to cry IS in the shower. No one seers your tears, the sniffles can be washed down the drain, and you can always say your red face was due to a very hot shower. I feel your pain. You are so brave. Most people don't realize what it's like to have no other options left, other than the reality of dying, because you inherited a faulty gene. Be strong, and thank you for sharing your heart and soul with us.

yikes
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

she's so beautiful and strong and powerful. it hurts to see the way that the world treats some people, but she is making light of it, and lives everyday to the fullest. its amazing, how people can preserve through hard times and this amazing woman is an example of it.

Dian Ella Lillie
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Everyone should have the right to die with dignity, on their own terms. If anyone wants to eschew this right they should be welcome to do so, but not to put their own fear of mortality onto others and force them to live in suffering and abject distress. I've watched loved ones die this way, and there is no reward at the end. It doesn't "build character", it doesn't give them a lovely sense of "well done you" at the end, it's just inhumane misery. A dignified, peaceful and painless death when a person chooses to die is the best gift we can give people at the ends of their (OUR!) lives.

Lara Sommer
Community Member
4 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

I Wish you best luck with What you left fighting for. I can Imagine your pain and really Wish you AS many regular and good days as possible. I have a dying bone in My feet and Arthrose in The Same Leg and therefore im Just able to Walk with crunches Most of The time. I feel miserabel about that and Often so Jealous at Others people. I completly can Imagine your Feelings. I Hope you dont missunderstand My saying AS comepting cause i dont. I Just Reader your Artikel and was Like, Oh i know those Feelings. Greetings. Write to me If you Like. I would bei Happy

John Hermanson
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Holly- Thanks for your effort to be visible and reach out to express yourself as you are. Your vulnerability, honesty and courage to face your options which includes your right to a merciful passing is inspirational. Your plight is close to me. My sister Kathy Huser passed away from ALS July 4th which in the USA is Independence Day. Our family and her friends have an expanded meaning to this holiday as Kathy's day of independence from her suffering. She lived in Colorado where they have a "Right to Die" law. She did not choose to do this in part because her Palliative Care Physician said that the difficulty and emotional toll may not be worth it to Kathy. She said that in the end she could provide enough medications that she could pass comfortably. Whether she did is questionable and at sometime i plan to further study what is know about the experience she may have gone through. In any case I am glad that she had some choice and that the state of Colorado acknowledged

girlonfire783
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Sorry about your sister. We don't have a law covering "death with dignity" where I am but as they are both passed now, it doesn't matter... When my mother-in-laws father was passing (like he was on the edge and had been on hospice care at home with visiting nurses for some time) they had instructed MIL to call them when his respiratory rate got to a certain rate per min or hour (I forget, it's been a while) and then they instructed her to administer a morphine injection "for his pain" (enough to slip him off into a nice forever sleep, painlessly - they all knew this beforehand). He was gone in minutes instead of what would have been agonizing hours of painful respirations, etc. People should have control over their own body. I myself have two incurable auto-immune diseases that are degenerative and other painful illnesses that like to tag along with them just for fun... If it got to the point where I felt I had no quality of life whatsoever, I'd end it in a heartbeat.

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Zet
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

i feel so sad to know that there are people wo would prefer to die but legally can't end their lives... as a swiss citizen where euthanasia is legal i completely support the extreme cases that are not correlated with mental problems. stay strong girl!

Cat
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

My nan went into coma after a stroke and was cared for in bed for close to 7 years. She was well looked after but it wasn't life. Half way through that, my dad sat me and my sister down, and told us specifically that if he fell into a coma, let him go. I'm with him on that decision. I've always led an active life, if something terrible happened and I had to rely on others entirely, I'd like to have the option to exit the world. It's about having the right to decide one's own path.

Bored Fox
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

It is sad that euthanasia is not legal in most countries. I remember several years ago when my granny said that if she gets Alzheimer's other severe health issues when she gets older she does not want to spend rest of his life in a nursing home - she would rather die. And now she has Alzheimer's and she is living in a nursing home and does not understand much what is happening around her. :(

Slune
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

So sorry. In case of Alzheimer or other hopeless health issues it should be a human rights to choose your time to leave the earth and die in dignity! In this regard Switzerland is very advanced .There are organizations like Dignitas and Exit who guide trough euthanasia.

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Rachel Egan
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Thank you so much for sharing this. I know it isn't the same, but my mum is very severely disabled by MS; she cannot speak or write, walk, stand or sit up and struggles to swallow sometimes (she is tube fed). I find it so hard that there is so little awareness of this level of disability, and such animosity towards euthanasia. I wish you all the very best and hope you find a little happiness in every day and I do hope once day that people have the right to die with dignity and their friends and family around them, with all the proper safeguards in place. xx

Fairsher
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Makes me even more thankful we have Assisted Death here where I live. Everyone should have the right to choose a peaceful passing, as part of their advance directive . We have a wonderful Dr. and nurses who provide this service with compassion and love.

Mad Mar
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

You are a beautiful person with a wonderful mind. If your choice to leave is legitimate then you should be able to make that call. Although in a positive kinda way, Stephen Hawkin led a long life in a chair and still was a great mind. If you still can share your brain, I'd say hang on. If the pain is too much then you should prepare all your documents and then ask your s/o to see what or where you could go to peaceful leave your pain. But if you could use your mind a little long, you might create something to leave that changes the world. Much love and thank you for sharing.

LeAnna Lukas
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I do believe there should be a time and a place for euthanasia. Like following anyone's end of life wishes. I u Der stand some of your suffering but not to that degree. You mentioned depression. I have felt trapped in my mind as you have in your body. Sometimes it takes every fiber in my being to get out of bed. I am so sorry for your diagnosis. I think people need to hear your message.

Sj Peet
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

" Im angry at you. I'm jealous. I want your shitty life"... I balled when I read that. Shes so right ... I fuckin thought my life was shit but after ready this perspective... it really hits hard. Inspired <3 A wonderful of looking at life and death

Ilir Toli
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Your story made me think of everything i have and be able to do in my life. I hope u have a miracle from God to get healthy again.

Larry XK
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

You and your partner are extraordinary Human beings.

Elena Adams
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I was just complaining to my boyfriend about how much I hate my job and said "whatever dude, fuck life anyway" and then I read this. And now I want to cry.

Tyler Duffy
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

It's super sad for someone to think death is better than life. But sometimes it is. There are groups devoted to this called Right to Die groups. This shouldn't be taken lightly.

Lena
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

wow... great article. this Girls Story is one of the many reasons i believe every human being should be able to decide for him or herself when and how they want to leave. as much as i agree with here, i don't agree with her Anger. how can anyone be angry towards other People lifing ? and no... you don't want my life. trust me. no, i'm not dying, no i'm not in a bed 24/7, and no i'm not on life Support or anything like this and yet... you don't want my life. trust me.

Bobbi Newell
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

What makes her angry is that when MOST people complain, their problems are fixable. They have the choice to make a change and don't. Your situation, like hers, happened from circumstances beyond your control. I'm glad you're still fighting to go on. That's different from the social media whiners who are just looking for sympathy.

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Mariana Pinto
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Thank you. And, also, I'm sorry...

PyroarRanger
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

oh my god this is amazing and opens my eyes so much

Raluca Andreea
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Holly...Thank you for documenting this. Thank you!

UnicornHuman
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Such a fighter! Proud of you for sticking it out and urging and inspiring others to make the most of their lives. God bless :)

Slune
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Hello Holly, thank you for the deep, unvarnished post! I like the way you still have this strong attitude that shows the fighter in you.....and that smile! Except,of course, you felt miserable:(..... I like your T-shirts: Statements! I can totally understand your wrath against people who just "live along" without appreciating life.....it's so precious. Like your Luke and the cats! I wish you many "good"days and the option that you would be able to

Slune
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

....make your own choice when it will be the right time to say adieu to Luke, familie, cats and all important and beautiful, unimportant and nasty things in your life. I keep my fingers crossed for the best for you. Your post left me shaken and after looking in your beautiful, strong eyes I will never ever be able to forget you!

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Peter Ager
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I think you deserve to have your last remaining strength available to punch those politician's, who deny your right, right in the face. You deserve to end your life on your terms, no questions asked. You're living your life, on your own terms and while our politicians may be gutless, you're showing us all you're not. BTW, love the crazy cat lady tat on your shoulder. Dammit go girl!

Ruby McDee
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

How wonderful would it be if we could choose to end our suffering and go out when life is good, instead of spending your final days debilitated and in pain? Kudos to you Holly for your fight for all of us.

Michael Makovi
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Thomas Szasz used to say that if you can't end your own life, then it isn't really your life. That is, you don't own yourself unless you can end yourself.

Alyson Lovegrove
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

From this day, any dark day i have, i shall remember you. Any day i can push my self to do something, I'll remember you. Thank you for sharing your story on behalf of yourself and many others. Thank you for saving my life today. Thank you for perspective. Sending you, love, light and health ❤️

Connie Smith
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for making me get off my ass and stop feeling sorry for myself. I needed a good ass kicking. Thank you for posting your life for all of us to see and appreciate so we never forget how precious and beautiful life is if we just stop whining and get off the couch and live it. Love you young lady.

Pascale Griffe
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Holly, you are an impressive young woman. Not only for all your achievements, but especially for your wonderful spirit. Thank you for sharing your story. I send you hugs. May you find the peace you seek.

Bari
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

"people battling acquired diseases like cancer but most of these afflictions either kill you or you ‘recover’, so although the suffering may be great, it’s relatively quick" Yikes. In the words of South Park, I'm gonna stay out of this one.

Adi B.
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I love you. I support you. Be strong, you'll live <3

Petra Christovová
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

This is so messed up .. I wish there could be something done for the girl, other than assisted suicide. But the worst is the realisation that she can just choose between fast death and less fast and probably more painful death - no other alternative. I do not see euthanasia as inherently bad, if someone feels that the pain and suffering is unbearable and there is no chance then she/he should be helped. It is probably always choosing the lesser "evil".

Amanda Panda
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for sharing. I hope you get to choose your path.

Miriam Vr
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I completely and totally agree with the fact that we should be allowed to decide when to go when we can't get better. I had to watch my dad die slowly for 10 years and it was the cruelest thing you can do to a human being. He was on dialisis even when they knew he had no chance of getting a transplant, 10 years of that plus maaaaaaaany other issues. His last 2-3 years he wasn't even there, he was just a breathing corpse forced to go on. I really wish you get to decide when, where, how and with whom you want to just let go. I hope you have many not-so-bad days ahead.

BusLady
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I have to admire this woman's courage, and the dedication of her boyfriend. I believe Holly should have the choice to end her life when it becomes unbearable. If anyone is interested, there are some great books written by Dr. Elisabeth Kubler Ross. She spent her career working with people who were dying, and their loved ones. Fascinating subject. She worked with many people who were suffering, and just wanted it to be over. Assisted suicide was not an option.

Chris Arnold
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

You are courageous beyond mere words. You are beautiful beyond your outer shell, brilliant, passionate and blatantly honest. You give so much gratitude to those aka Luke walking this journey with you. I pray that God grants you and yours mercy, comfort, peace and healing. I believe prayer is powerful and God hears all. Thank you for your posts I feel incredibly appreciative to you. This is real🌟

Brigitta Swart
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

You are an amazing person. I am so sorry for your suffering

Azure Adams
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Awesome shoot and everything (except the disease, that sucks). Move to the US and to Oregon. It's legal there but there are many hurdles. Look up Brittany Maynard's case. Brave and love the simpsons crazy cat lady tattoo!

M M
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Dont let bureaucracy determine your fate. You'll need a bottle of grade A 99.5% purity nitrogen and a regulator. Also a plastic bay with a draw string. Attach the hose from the nitrogen to the bottom of the drawstring bag - make sure its airtight. Place the bag gently over your head and pull it down to the top of your upper lip. Tighten the bag slightly so it is sealed on your head. Slowly turn the rugulator so the nitrogen fills the bag. When you are ready, exhale completely and pull the bag down to your neck and tighten the drawstring. Wait a few seconds for the nitrogen to expel any remaining oxygen. Breathe deeply. It is that easy and simple. No more pain.

Ohio Hands
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

The state and doctors shouldn't be involved in someone's choice to die. Do the research, find the best methods for a peaceful end, plan it and then at your choosing do it. If its YOUR life and YOUR choice, then its YOUR responsibility, not the state or a medical professionals. Involving third parties and seeking the blessing of the state isn't necessary nor is it moral, passing on that responsibility and acting as though you need the state to grant you a right is misguided. Sorry this response seems so void of emotion, but I think thats how these kinds of social/personal matters should be, emotions should not dictate law or morality.

Catffirmations
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Many of these patients are too ill to physically complete the acts necessary to end their lives. Additionally, since they are not medical professionals they may not have the access to the medicines to end their lives, nor would they be experienced in administering the medicine. If the patients were forced to do it for themselves then they may end up causing further harm (e.g. going into a vegetative state) without actually ending their lives as they wanted.

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Human
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Wow.. Makes my "big" problems seem so small. I wish you the best of luck!

Kate
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Thank you so much for sharing!

London River
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

You. Are. A. F*cking. Queen. A lot of people don't realise how lucky they are until they see someone worse than them. You deserve to be angry with us. You deserve to have happiness and Luke (which may be the same thing for you :)) and you deserve the whole f*cking world, because you are strong, you are resilient and everyone should see this and see how f*cking lucky they are. I mean, look at you! You were doing your phd, and look at how far you've gone! Keep being strong, and I'm so sorry that you're stuck in bed every day. It must be absolutely horrible to be sick everyday, and to be feeling like everyday is a marathon. Now I see why you have Bored Panda, it really is a buster for your boredom! You and Luke are beautiful human beans, and I wish you both (and that cats!) a happy life. They say live life to the fullest; well I bloody well think you're a perfect example of that.

Mitsos Dream
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

You are a great person, helping others evaluate their life and fighting for your rights in life. You are also beautiful!! Greetings from Greece!

K. LNU
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I am all for assisted suicide, especially in cases like Holly's. There is no cure. Her progress is only going to get worse. Her quality of life is slowly and painfully going downhill. As many pointed out, we help animals - when they are in pain, beyond care, and there is no solution to make them better, why not people?

Kiki
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I find it outrageous that women can get abortions on the grounds of, "My body, my choice" but people cannot choose to end their own lives if they want.

Cristi Beehn
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

This has been a topic of discussions for my sister and I for years. We will all die someday and I agree with the author. My grandmother lived for 15 years after a stroke. She had no idea who anyone was. She spent those years in a strangers house being cared for by the same. So unfair. My mom was blessed with a more rapid pace if decline. She mentally left us about 4 years before her passing.

Ian Sirota
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

My heart goes out to this poor woman. She clearly deserves so much more from life, including the ability/right to end it on her own terms.

Chrissy Core
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Hi, Lots of comments here so not sure if this has been mentioned, my sister chose euthanasia herself last year and did it even without a life threatening illness. It is our human right to choose when we die and to die in peace. That is what Dignitas works to support for people globally: http://www.dignitas.ch/index.php?lang=en Maybe crowdsource fundraiser could help you with expenses i that is an issue

Mascha Claessens
Community Member
4 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

I knew someone who was in terrible pain daily, like you. She had a life long muscle disability which made her misarable. She was also happy, at times: she visited metal concerts (at which I saw her usually multiple times a year), she had friends. But also lots of physical ánd mental problems. She endured all of this, while she got worse and worse, but always stayed SO strong. Finally, it got too much. Luckily, we live in The Netherlands: you can get euthanization here, if you really only have a very painful future in your foresight. So finally she got her last wish: to sleep forever, when SHE wanted to, not when her body gave up. I really hope other countries get laws like this too. It's hard, and every case needs to be inspected very thoroughly, but it's possible, and I think also very desirable. You've seem to have been SO strong for SO long, and these pictures are beautiful. I think you (and anyone who only has a future filled with physical and/or mental pain) deserve to choose when enough's enough. Stay strong!

Jodi Sonoda
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

As someone with a disease that causes extreme exhaustion struggles, I can only imagine what it must be like to know you’re not getting better. I can’t work right now, I’m on the edge of losing everything, and I’m mad too. Working on doing less self pitying but some days... lord some days. We all need a Luke in our lives. I’m glad you have someone who is truly by your side and supporting you. I hope when the time comes, you’re able to make the choice that is right for you and that your advocacy will help others who want that same choice. From one cat lady to another... I wish you freedom, in whatever form is best for you.

Kiahna
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Your story reminds me of mine. I didn't have a fatal disease though, an eating disorder. ARFID. I struggled with eating anything, I couldn't leave the house because I was terrified of everything. I was the size of a 6 year old at 14. I wanted to end my life too. Still do. Even though I can't even begin to imagine what you feel, I respect you. Even after all the shit I've seen, it's not much compared to you. I hope you are able to have a peaceful and humane death.

Christopher Lee
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

It was only when I saw you mention Dying with Dignity Qld and the Qld Health on the pillow I realized that you're right here in the 'sunshine state' - keep fighting for the right to die on your own terms because I want that very same right when my turn comes. It should be a basic human right - the right to choose the time and manner of their own exit from a life they no longer find valuable. After reading classical authors like Marcus Aurelius, Epictetus and Seneca my views have really crystalized - Musonius said: "Choose to die well while you can; wait too long, and it might become impossible to do so." So, we should all be able to choose the time and manner in which we face death. In fact, how do I/we assist this fight to change the law in Qld?

Karasi Mills
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Holy shirt, this sucks. Thank you for bearing honest witness to your journey. I really hope that your time is as alert and painless as possible. I will always vote in favor of assisted dying laws.

Magpie
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I know i don't understand how it feels. All I can do is listen. And hope with you. When I was a nurse I had faaaar tooo many people ask me " give me that injection the vets give." We are allowed to be kinder to our pets. Suicide is logical. More logical is to have sufficient medical help that is it quick, effective and painless. And you (anyone) can die in the arms of their loved ones. I also know that "thoughts and prayers" are NOT enough. Get up there readers, and write a letter to your relevant politicians.

Antoni Salim
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Really inspiring. Good job, good luck and remeber God always be with you.

Krystalyn Jackson
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Washington DC and the states of California, Colorado, Oregon, Vermont, Hawaii, and Washington 👈 all the places in the US where you can get assisted suicide...

Dave H
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I'd feel the same way you would. Nobody should force me to suffer if I don't need to. When there's no solution, you make your own solution, and you should have that solution. Your fighting spirit has shown you're getting out of life what you can, which was the point of keeping you alive to begin with. At this point the decision should be yours.

Dominic Biondi
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Wow wow wow...you are amazing, Girl. Keep fighting for what you want and what you believe. You rock, your cats rock (I have two, too!), and Luke rocks.

Lana Belysheva
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

How unfair it is that such a beautiful feisty soul has to go through this pain.

D Zavozin
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Before I read all the comments, I knew what I'm going to see. And I knew the top comment all along. "Omg, we are so sorry for you" and "Omg, that makes me reevaluate my life and start doing more with it". Did you tho? Honestly. Did it??! You will forget about her in the next 10 min! But even if it did make you reevaluate, you're a sick person if you need to see someone dying the most horrible death to "start doing more with your life" - shame on you, I feel very sorry for a person like that!

Alyson Lovegrove
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Any dark day i have, you'll be the first

Louise Gerathy
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

What an inspiration you are. It's amazing how people take health and 'Normal' lives for granted. I know I'm guilty of it. I truly hope you get your peace and are allowed to leave this earth when and where you want to. We are allowed to let our animals go peacefully so why can't we do this as people? Huge love to you xxxxx

artist-in-residence * (artist-in-residence)
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Hey Holly, I'd love to write to you and chat if you ever wanted to, I will be here for you even if only over the net.

Sick Boy
Community Member
4 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Crowdfund for a trip to Switzerland is what I'd suggest in case there are no other options!

Grumble O'Pug
Community Member