today i had the opportunity to read a blog written by the brother of the comeback. i was not surprised to see that craig is as talented as his brother shane. what did jump out at me was his declaration that he had no words of wisdom. some of us do feel as though the healthy community looks at us to have answers to questions we all have, in addition many of us feel as though we have to be strong for others. it is up to us to make sure that the healthy friends and family are not made to feel guilty when they are not being the kind support we need. we are taxed with supporting them through their angst over our imminent death.
this is not like most of my blogs and i am not sure why. reading craig’s blog made me start thinking about the reversal of support. should someone make the sacrifice of coming by to see us? they have things to do and places to be don’t they? our healthy friends and family can’t be expected to actually go through that uncomfortable visit when they could be doing something fun should they? i know that we the dying make the choice to smile and be supportive or acknowledge just how selfish we can be.
no we are not selfish and neither are the ones who love us. another friend wrote about the burden of love, the weight of it. there are times when i wonder how my love stops himself from walking out the door and never looking back. i do love him so it comes easy to support his need to be away from time to time. actually he would, he says, be fine with staying here with me just in case.
tuesday i was experiencing so much pain that i went to the dr. my dr says this would be a good time to go in the hospital. he felt this was an appropriate action. he also knows me and said, after seeing the look on my face, we could do all the tests that day and get the results in a day or two. if i were in the hospital he felt things would move faster. in the end we decided to go outpatient. wednesday i was feeling a little better so we went out. sitting across from each other, chris shares he is concerned we are not being prudent to go on a cruise. after a moment of thought i responded…. i am going to die somewhere so why not on a cruise? the blank look on his face is not a new one with me. he says ok. guess i will figure it out if it happens. my point is i don’t want to sit at home waiting for death to come.
turns out i probably passed a kidney stone and my liver is getting worse. the good news is we are leaving next sunday for a 7 day cruise. i will not have to be strong and wise. he will not have to be strong and wise. we can be two sweethearts sharing an unforgettable experience. i am feeling wiser already!
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Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.
There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.
1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.
It is very important to try to honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.
2. I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.
By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.
3. I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.
We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.
4. I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.
It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.
5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.
When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.
Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.
What’s your greatest regret so far, and what will you set out to achieve or change before you die?
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william peace is a well-known activist and we have had some discussion over our difference of opinions. after watching dr. oz i wrote about my feelings regarding the right to die with dignity movement. i received a well thought out and informative message from william. at the end we both felt it was important for reasonable people to sit down and have, as we had, a reasonable discussion. what i could not agree with in the end were two main points. first i will never agree that just because one person believes a certain way they have the right to thrust that belief on me. for example, some believe it is a sin to take your own life. i have heard it said that only god has the right to decide who lives or dies. my question is what about those of us who do not believe in god? we do not share that certainty and i do not believe those that do believe,have the right to tell me some entity i don’t believe in is going to make this decision for me.
the second was i did not believe as william does about a slippery slope. my understanding is if we have the right to die with dignity then somehow (i am not sure of the details) people with disabilities are at risk for being euthanized. until seeing Frontline-show this seemed a bit murky to me. the show outlined once again how some states are allowing assisted suicide and others are prosecuting these cases. the first person followed is an 80-something woman with advanced lung cancer. she has made the decision to end her life. the group Compassionate Choices were all set to help her. she had purchased the medication needed and knew what she was going to take and in what combination. her husband said he was catholic and would not do this himself but felt she had the right to die the way she wanted to. this all was in line with my belief in the right to die with dignity. next was the story of a woman named jana.
jana was a 50 something year old woman. she believed she was terminally ill. in fact she was not. she had gallbladder surgery years ago, she thought she had breast cancer, she thought she had high-blood pressure. there were a couple of other ailments on her list. this list was submitted to the Final Exit Network. ostensibly the list was reviewed by a physician who approved her for assistance with her suicide. someone from the network went over how she would make a hood, connect it to a tank of helium, slip it over her head and turn on the gas. they would then remove the hood and the tank so people would think she had died of natural causes. her relatives were suspicious and called the police. from there it was discovered just how she had died. here is the thing that shocked me, as i see this list i realize she is not terminally ill, although she had claimed to be in horrendous pain. some say this pain whether real or not caused her life to be not worth living. her sister testified that jana was mentally ill and did believe she was dying, she had believed this for many years. my mind is still trying to make some sense of a dr. approving her for assisted suicide.
of course another way of looking at this is to understand how important regulations are. if this were legal as it is in oregon and washington this kind of thing would not happen. any dr. that prescribed the fatal cocktail would be under constant scrutiny. only patients who are terminally ill would be eligible. as long as it is illegal it will remain like back alley abortions. when abortion is legal it is safe. whether we agree with that choice or not is not important. a woman has the right to decide what happens to her body. too many women lost their lives and their ability to have children in the future just because one group of people wanted to tell others how to live their life. as with the right to die, abortions are personal choices that do not infringe on the lives of others. i understand the argument and yet i do not agree. i am concerned here about jana and how many like her are being “helped by these groups who claim to aid/assist only those who are terminally ill. how many jana’s have there been?
the following are taken from the websites for the afore-mentioned groups.
this is from the Final Exit Network:
Our Guiding Principles
We hold that mentally competent adults have a basic human right to end their lives under the following conditions:
- they suffer from a fatal or irreversible illness or intractable pain,
- they judge that their quality of life is unacceptable to them,
- they judge that their future is hopeless.
compassionate choices is another organization developed for the same cause.
Compassion & Choices is the leading nonprofit organization committed to helping everyone have the best death possible. We offer free counseling, planning resources, referrals and guidance, and across the nation we work to protect and expand options at the end of life.
For over thirty years we have reduced people’s suffering and given them some control in their final days – even when injury or illness takes their voice. We are experts in what it takes to die well.
William Peace, i understand your concerns now. i now ask how many people like jana has this organization assisted to leave this life too early? any dr. could have easily evaluated her request and understood she was not a candidate for their final exit plan. mr. peace i hope that you will continue to find the strength to fight for the jana’s of the world.
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a lot on my mind but today
i can not think
i can not breathe
i can not write
today the pain has exhausted me and so
i believe tomorrow will be a better day
I believe tomorrow i will be able to share my thoughts
i believe tomorrow will come…
i believe
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after our trip to the coast i came back with an additional 13 pounds of fluid in my body. i feel like a balloon that has been inflated beyond capacity. tie a string to my toe and put me in a parade! of course i would never fly with all that extra weight. not like i am gonna blow away here anytime soon. day after day, one reason or another i have not taken the meds to help. the fluid pill makes me itch from the inside out. it feels like i could just scratch my skin off to get to where the darn itching is. my dr. has even given me meds to counteract this effect. there are other times i itch like this and it is just the combination of meds i take along with the disease. all that can be done to help has been. this is just a case of it is what it is. last night after a great day out i decided to bite the bullet and take the fluid pill. it is much stronger than the lasix which is the first prescription most get. this will leave my skin dry and even cause some joint pain but i will be able to breathe better. so here i am this morning 5 lbs lighter. this means, and i already knew this, that i will need to go through this one more time to get back to what is normal for me.
i am not talking about this just to be complaining. there is actually something very nice, for me at least, about this. friday night i got together with a friend who also has some of the same heart issues as i do. so that is not good for her and i hate it for her. she has two boys who are still young and now a new granddaughter. she has had enough loss in her life to deal with. all of this aside we went out friday night and it was just fun. neither of us had to feel like we were holding someone else up or taking too long to walk. when you are out with someone who doesn’t have any health problems they are walking much faster than we can. sometimes there is the look back to see what happened to you and other times people get to the table and realize they are alone. most of the time we all just laugh so no feelings are hurt. going out with someone who can’t walk any faster than you means you both get there at the same time and you both understand. no apologies are needed. a whole evening of not feeling like i am slowing down anyone else. i was exhausted by the time i got home but felt so great at the same time.
not looking forward to taking another pill but i know how fortunate i am that there is a pill. it has come to pass that i know how my grandmother felt. she used to talk about how much the world had changed since she was a girl and when i think about how much has changed since i have been alive. things that use everyday like the microwave have been developed in my lifetime. medicine has really changed, what is being done with robotic surgery completely amazes me. medication is nothing short of a miracle. things that in the past were considered terminal/incurable are not only being cured but those things that used to cause great suffering are now an inconvenience. just think, cancer that was a death sentence is now treated and in months the patient is cured! even if not cured the years added by modern medicine is astounding. i have a defibrillator in my chest!! a pacemaker to set the rate of my heart, medication to push fluid out of my body. that we can create a human being and give that human being life is unbelievable. to keep a human being alive longer, and not just alive but alive and living a happy life, is incredible. glad i got sick now and not a few years sooner. grateful for the time i had with my friend and grateful for the time we both have been gifted by the medical innovations.
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last evening and night were one of the most difficult yet. even with the excitement of the presidential election to distract me the angina pain, liver pain, leg pain and inability to breathe could not be denied.
he reached and held my hand. no words were necessary. the warmth coming from his beautiful, loving hands said all that needed to be said. love you’s as deep as the well and passionate as young love flowed from one side of the lounger to the other.
today in the car he asks “is there anything i can do when you are going through that?” the answer? you are already doing it. the comfort of your love is the only medicine i need now. it is the only medicine that can bring real relief from this eternal pain. we both know this is what is supposed to happen. that doesn’t mean it doesn’t stink! as a mist comes over his eyes and i fear he is going to cry….
look honey aren’t the trees amazing this time of year? wow what a great day!
and just like that we are back to us and appreciating this day we have been gifted.
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lisa welchel was a child star. as an adult she shares how difficult her personal life has been as a result of this. she seemed not just sad but determined to spare her own children the same fate. well before her star days lisa was a shy girl. in her own words she has never been good at “chit-chat.” this really struck a chord with me. growing up my grandmother had many wonderful traits, her chit-chat was not one of them. in the early years of my life i rarely had anything to say and mama would explain that i would talk when i had something to say. over the years i would hear similar remarks, while working on my graduate degree one of my professors said she respected me as i didn’t just ramble, in her opinion when i spoke it was worth listening to.
even as i read the words i feel the same unease as when it was said the first time. it certainly sounds like a compliment doesn’t it? then why do i feel this way? the truth was i never really knew how to do the whole small talk thing. when lisa shared her inability to chit-chat i knew exactly what she meant. being a therapist was perfect for me, listen to people and they will imagine you are whoever they need you to be. as a nurse, working air-evac trauma was perfect in its own way. a couple of times it was unavoidable that i ended up on a unit in a hospital. patients would say my presence gave them comfort, although at times i knew they wanted me to say something. this is where i learned to say things that i felt and under the circumstances it didn’t seem too weird. re-assuring those who were suffering as well as those who would get well and leave.
my ys is great at chit-chat. she can go in any room and fit right in. she is everything i am not when it comes to social situations. i do not envy her so much as admire her. to know that kind of ease with other people appears to be one of those natural abilities. to be very honest here and a bit ironic, when working with youth this is something i actually helped them with. those who can not do… teach? fortunately they never knew what a fraud i was.
what has always been genuine is my love of others. i am grateful to have this love. maybe i am not good at chit-chat, that is fine with me. i can admire in others what i am not able to do and be satisfied with the gift i do have. maybe some of us are not meant to have numerous friends, maybe some of us are meant to have this love of our fellow man and have the blessing of family and a small group of friends.
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last night is not the first time this has happened and it is so frustrating. when all was quiet i knew i wanted to share some thoughts and feelings here. the problem was the thoughts could not find their way to the fingers. fingers were at the ready, just come on brain, give them the words. at one time i had a fairly good range of vocabulary, not now. sometimes words are right there just waiting to jump out yet when i sit in front of the screen? nada, nothing forms. at times i would swear that the words have a feel and taste to them, they are as real in my mind as they are when typed. after this disappointment, more often than not, all the words and more come bouncing forward. thoughts and phrases lost earlier are now rollicking through my ready for sleep mind.
it isn’t surprising with the lack of oxygen to all my vital organs of course my brain is affected. driving vacations are probably not the best anymore. after only a couple of hours in the car my fluid retention is a hazard. once we stopped i was too exhausted to take the medication that would have helped. since i do not want to disappoint h or myself i push to get up and moving long before i have had enough rest. we did take a nap every day except the days we were driving from point a to point b. our room was separated from the marina by a small street. it seemed a shame to be so close and not walk over and see the boats. when planning this vacation we had planned on spending time with ferry rides to the island for some sightseeing and hopefully an encounter with the wild horses. the hurricane made it impossible for anyone to travel to the islands. the state ferry was shut down to all except those who lived on the island.
walking a block to the coffee shop took 45 min. to an hour. with much encouragement h did go out once without me. his resistance to spending time on his own makes it tough. i am no longer able to push through and wish we weren’t at this point but here we are. in a short time we will drive to charleston and already have reservations for our bed and breakfast along the way. we are both looking forward to thanksgiving with our family.
our next trip is in december, we are going on a cruise. this should work out well since i can retreat to our room and put my feet up whenever needed. of course that will be followed by our christmas in charleston. this was most likely our last extended driving vacation. it had to happen sometime and i certainly have no complaints. we have had some amazing trips in our years together and have our memories. when i am experiencing extreme pain we go through those memories together. it is my hope that although i am at times robbed of words that i will not be robbed of my memories. if i think about it though, i have to say i probably won’t know that i am without those memories and i have family and friends to help me remember.
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though i did not post any updates on my own blog i was able to continue to check in on some of my friends here. this is truly a miracle, a small one but quite handy. through facebook, email and smart phones we are able to stay in touch and reach out to those we love.
hurricane sandy devastated so many it is hard to wrap my mind around it. while in the army we practiced mass casualty situations. under certain circumstances we were fully prepared to take action and do the most good. as we all know it is one thing to practice and another to be in the thick of it.
we left here on sunday for the “crystal coast” and stayed at a beautiful hotel a few hours away. the next morning we called the inn we were going to stay at and they said come one everything is fine. when we got there it was extremely windy and i hate to say it but i was grateful. i was able to rest and just hang out in our room. the trip was so much more exhausting than i had expected. the fluid retention was also more than i was expecting. there never seemed to be a good time to take the pills that would ease the fluid retention. not to blame, it just seemed everyday that maybe tomorrow i would take care of it.
here are a couple of pictures taken from the balcony of our room.
i am too tired to fix this tonight but for some reason the last paragraph did not post:( ah there is tomorrow to work this…
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look honey aren’t the trees amazing this time of year? wow what a great day!
the dr. says 