The Right To Die debate is one I have strong opinions on. Ever since Brittany Maynard decided to end her life to avoid inevitable agony and suffering and watching her discuss this in many interviews, I concluded that the Right To Die law should exist for everyone, everywhere.
There are pitfalls no doubt. I can imagine nightmare scenarios where people are ‘terminated’ by bored relatives who do not wish to take care of them. So obviously safe-guards must be paramount. That said, I am open to the RTD law be expanded to include dementia patients and those with serious Chronic Illness, including long-term-depression.
That’s murder! You may say. And part of the invariable slippery-slope! But I would disagree. Unless you have been the victim of Chronic Illness and/or long-term-incurable-depression you cannot speak for others who suffer each and every day.
A few years ago I killed a kitten who was suffering. It was in agony, unsavable and its liter mates had died in excruciating agony. It was a Sunday and no pet-store nearby was open to euthanize the kitten. To spare her suffering I put her to sleep myself. It was the hardest thing I have ever done, I didn’t actually think I had it in me (to take a life) being vegetarian among other things. But the compassion for her suffering over-took the fear of harm.
The harm was her suffering any longer and that is how I see RTD laws.
Obviously we have to put into place protections against this being misused. I recognize that many deeply devout folks believe God takes us when we are ready, but I have never subscribed to that. How is suffering in agony EVER God ordained? If a God exists I do NOT believe he/she chooses people to suffer in agony for years on end. Thus for me, that argument is moot.
Without the issue of ‘taking God’s job away’ we are left with the morality of RTD laws. If I see someone suffering as horrific as it is, to consider their dying at my or their own hands, I would want to help them not suffer. If that was their true wish.
In the case of dementia patients, if they sign a waiver now they can ask not to be force-fed and kept alive, but it still means those wishes can be ignored, effectively they can exist for years as a vegetable, and do nothing about avoiding that outcome. This isn’t a pragmatic thing. Obviously our society is going to be destroyed by dementia cases as more and more develop it, but irrespective, this isn’t about convenience of death, it’s about the mercy of death.
Few of us (I know some exceptions) would wish to shit on themselves, not be able to eat, remember, function etc, and lose all dignity and awareness. Most of us would prefer to die. Giving us a way to write this out and have a representative help us achieve this, seems to me, a mercy not a convenience.
The whole subject is heart-achiningly awful and we avoid talking about it for the most part. But we need to think of this. Just recently with Covid 19 ventilation, the question of dying and life has been very pertinent and young people who never wrote living-wills have been in limbo. It is never too early to consider these things because we really don’t know.
When I put my cat of 18 years to sleep it haunted me. Briefly I went back on my belief that RTD was the best choice because I thought; If I can’t handle the images and flashbacks of the catheter being put in my cats arm, and watching him being put to sleep, if I felt that was ‘wrong’ in some way, how could I handle it if it was my dad? Or someone I loved?
Truly I think I am nearly not strong enough to cope with that day. But despite that I would still do it. TO END THE SUFFERING. It would haunt me and yes it would feel worse to me than if they died naturally just as it would have been ‘easier’ if my cat had died naturally instead of being given drugs that killed him. Watching that was horrific and it did feel ‘unnatural’ because it was but sometimes it’s the only choice, and it’s the best choice and even if it leaves us feeling horrific, we should consider it.
I don’t regret putting my cat to sleep. But I regret that it had to happen and I still get flash-backs of the last moments. If I had to do that with a human-being I know it would be the hardest thing I ever had to do. But if I loved that human being and it was THEIR WISH I would hope I had the courage and love within me to do it or be part of it or at very least, support their wish.
Having had chronic illness I know we can be ‘not in our right minds’ and so the issue of ‘how sick is too sick?’ must be considered. Depressed people for example, may be able to be cured, so are they really the right candidates for euthanasia? I don’t know the answer, I only know that if someone I knew had suffered for 20 years and wanted to die, I would find it hard to deny them that mercy. If all else had failed.
This is not what we want to think about but right now, out there, are many people who are in this VERY situation right now and have no recourse to end their suffering. I believe safe laws CAN be made that protect against abuses and I believe at this juncture in our societies evolution we need to consider those things, not to keep our sick numbers in check, but to be merciful to suffering.
The courage of Brittany Maynard has stayed with me ever since I heard about her and followed her story. Some may say that is morbid. I say it is honest. I still think of her, she affected me deeply and opened up this debate. I hope others can get over their prejudices of what they believe others should do and give people a CHOICE. Just like my best friend who doesn’t believe she would have an abortion but believes others should have the right to choose if they want to have one. Such is this debate about an individuals right to choose their outcome. Who can honestly deny that in the face of suffering?
I often think if I live to be old, I will be alone and I fear that very much. I think if it were possible I would choose to end my life simply based on not having enough money to keep going or enough reason and family left to make it worthwhile. Is that wrong? Maybe. But one day that too may exist as an ‘option’ and a mercy, to help those who would otherwise resort to suicide which can often fail and leave awful aftermaths. This is a very sad subject but it’s one many of us will one day face one way or another. I don’t want to dwell on it, but equally, I don’t want to pretend it could never happen.
I think now more than ever, we have learned, anything can happen and we need to be prepared. Taking responsibility for our lives AND our deaths is a responsible decision, and helps those who may be left in our lives, follow our true wishes. I hope I never have to find out, but I believe we should all be prepared for both the best case scenario and the worst. Contrary to popular opinion, taking ones life is probably the hardest thing a person can do, not the easiest. But as this article above states, there are worst things than dying and I would say suffering in agony meets that criteria and forces us then, to consider this subject honestly and with compassion.
Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.
I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.
I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.
You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.
If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.
I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?
It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.
That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.
You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.
Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.
What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.
The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.
I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.
I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.
Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.
It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.
If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.
First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.
I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.
Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.
I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.
Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.
So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.
Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.
I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.
That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.
My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.
If you’re reading this and you feel hopeless, know that you are not alone and there is hope.