Myeloma In Paradise: Why Is Death So Hard?
I have been diagnosed with a terminal disease.
So have many of you. If you’re reading this, you mostly likely at least know somebody who has a terminal disease. The vast majority of you are directly affected by this “terminal” diagnosis.
I think whoever came up with this term should get a linguistic award. "Terminal" sounds like a very serious word, without all the hassle of the word "death."
Please don’t misunderstand. I’m not trying to make light of death or to spin a humorous anecdote out of it.
What I want us all to think about is the following: Why is death so hard?
My 75-year-old uncle has had many problems with his circulation the last five years, most likely due to the effects of 50+ years of cigarette smoking. He has had vein transplants, an amputation of his leg, and finally two major heart attacks. He is still alive, but just barely.
One of his last communications before his second heart attack was that he didn’t want to die. He was afraid. This came despite his being on and off a respirator, four weeks in intensive care, and little hope of ever leaving the hospital. Unfortunately, he has since lapsed into a comatose state and is completely unable to communicate any more. While off of the respirator now, he is unable to control any part of his body and is being kept alive through a feeding tube. He is alive, but in the technical sense of the word only.
Because of his request to be kept alive (or his fear of dying), he has placed his son in an impossible situation. Should he follow his father’s request or mercifully end his father's suffering as quickly as possible? Did my uncle really mean that he wanted his life-saving wishes to be taken this far?
It’s impossible to say for sure because my uncle and his family never got around to talking about the subject. There was nothing in writing and unfortunately only my uncle’s words in his hospital bed to go on.
Why is my uncle so afraid to die? Should death be such a taboo subject in our society?
I have traveled quite extensively in my life and have been blessed to be exposed to many ancient cultures first hand. It is my experience that our “western” culture is one of the very worst at dealing with one of the experiences we are all guaranteed to be affected by at least once. Most likely, death will touch us multiple times in our lives.
While death is rarely welcomed by any culture, many other societies on our planet are not so fearful of it. In Bali, death is considered to be a blessed release from the burdens of this life and a step towards becoming a god. The Balinese will often devote an extraordinary amount of resources towards the funeral, as it is an important celebration marking this step. Death is planned for, talked about, money is saved up for it, and at least outwardly celebrated. It is not a taboo subject.
Many Native American cultures also treat death not as something to be avoided at all costs, but instead a necessary part of life to be undertaken with dignity, respect, and the understanding that the deceased is simply taking the next step in the journey of their soul.
None of these cultures embrace death, but I think their treatment of it allows those approaching death to do so in a way that is less scary. Giving death a more prominent position in life allows the people of these cultures to have a better understanding of their end. Because we all tend to fear what we don’t understand, this knowledge – right or wrong – dissipates some of the fear.
Don’t get me wrong. I am not advocating or denouncing anybody’s religious beliefs. If anything, I think I am actually trying to make a case that our society’s general lack of a unified belief is what has led to this situation.
While I don’t believe in any one religion’s definition of what happens after death, I do believe that there is a next chapter in my existence.
I think of myself as a scientist with a firm belief in the roles of physics and chemistry in our universe. What I like to point out to my scientific and/or atheistic friends, however, is that science has not yet been able to explain to me what is beyond infinity, or what was before time. To me, this is a bridge too far for our feeble little brains and is proof that there is something bigger than our existence in this life.
This is what keeps me from staying up nights worrying about the end. I look forward to finding out what’s in the next chapter! I know I will be more afraid as it gets closer, but I am hoping my curiosity will get me over the hump.
I encourage you to give this some thought also. Undoubtedly, everybody reading this is far ahead of the average person in trying to come to grips with death. That word terminal is hanging over all of us, myeloma or not, but myeloma makes it seem a lot closer.
Take the time to share your thoughts or your conclusions with your loved ones. They will appreciate knowing what you are thinking, or they might be able to help with your concerns. I know for a fact that if we talk about death, it will become less scary.
At the very least, please be sure that you have written down how you want to be treated when the end is near. If you want to fight the grim reaper to the bitter end, that is certainly your right. Just be sure to relieve your family of the responsibility of making the determination for you.
Until it comes, try hard to seize the day. Living fully is certainly the best way of cheating death!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Tom, Thank you for a very thought-provoking article. You are correct - we seem to have a difficult time discussing death and the preparations we need to make. Before my father died, he told me that he did not want to die. He was 85 and suffered from COPD due to an ER mistake several years earlier. He had always been a very athletic individual and not being able to breathe was very disturbing for him. Since his own father lived into his 90's, my father always expected to live long too. He never made a will either.
We are one year into our multiple myeloma journey and we have not talked about death. We are so consumed with learning about this cancer, trying various treatments and adjusting to our new normal that we are having a hard time thinking beyond tomorrow. Since we have been together 34 years, we have over time expressed our desires for care and the use of extraordinary measures in case of an accident. I do not believe those wishes have changed. I do not know when we will have to discuss death but it sits in the back of our minds. I think the scary part comes in leaving loved ones behind more than not knowing what comes next. I appreciate you raising this issue - it is an important one and is best not left to the last moment.
Thank you for this - a subject, as you say, is many times avoided. No matter what your belief is in the here-after, it's so important to the people you leave behind to be prepared. Death can be a beautiful (altho' maybe I should say bitter sweet) moment if one's family & friends are involved. Being an only child, I'm so thankful that my parents weren't afraid to let me know their wishes. Because they did, my mother will always "reside" in the backyard amongst her beloved lilac bushes and my father is once again enjoying the river next to the spot where he had family cookouts in Colorado during his childhood. It gives ME a good feeling!
Thank you Tom for raising such a difficult subject. I have recently read such an excellent book….Being Mortal….by Atul Gawande MD. It talks about this issue from the perspective of physicians and patients. His writing is excellent. I have given several friends the book. It seems like a great gift to help friends and family to start this conversation. Highly recommend for everybody, multiple myeloma or not! Life is a terminal situation. Right?
Well written piece, Tom. I have been thinking about two extensions to your question "why is death so hard."
The first is "why is any terminal disease so hard?" Today I had the thought that it's because it forces us to face our mortality every day, the very topic that you so eloquently describe as taboo in our culture. While most religious beliefs help people be less anxious about death, our culture's avoidance of the topic makes having to daily confront the issue of mortality seems to override those beliefs for many.
The second question is, "Why is cancer so hard?" Not only for patients, but for caregivers, friends, and family? Why, for example, does it seem harder than heart disease or other life-threatening illnesses? Although I am doing well, one of my sisters is so anxious about my illness that she can hardly talk to me. But other illnesses don't seem to provoke the same anxiety. I know that, at least in the past, some cancers were extremely painful. And certainly the treatments aren't pleasant. But there seems to be quite a different reaction to a diagnosis of cancer than there is to a diagnosis of chronic heart failure or CPD, both which kill people.
Thanks for the great article.
Ginny
Aloha,
Your feedback is awesome! You all raise such excellent points.
Patty - I think you're right not to wait until the last moment. If we talk about it maybe it relieve some of the anxiety associated with death.
Jan - As a parent myself I am certain your folks couldn't be any happier than to have their final disposition actually give you a GOOD feeling.
Kate - I will give this book a try. Thank-you.
Ginny - Your second question is a topic all its own! I too have had friends distance themselves for reasons I haven't understood. Anxiety over my/our diagnosis makes alot of sense. I think the reason it may be treated different is the physical suffering and physical changes that many cancer victims endure. It is scary to see people suffer. I think cancer looks scarier than chronic heart failure or CPD. Great topic for another article.
Aloha
Tom
Aloha Tom
You have raised a topic that is part of life. Death follows life always and it is not always the old that die, in many parts of the world it is children, mostly from preventable diseases. We do not have a preventable illness, let alone one for which there is a cure.
In times of increased life expectancy, due to various health advances, we have got accustomed to the notion of reaching retirement and having some relaxed life before old age and infirmity set in. But statistics indicate a not insignificant percentage of people do not reach retirement age for reasons other than having myeloma.
The fact many of us posting are mostly in the active age group, with families to support, sometimes working, or not far from retirement, it can come as a a shock to realise what a diagnosis of myeloma can mean.
Facing ones mortality suddenly can lead to people denying this or choosing to get their affairs in order, giving priority to the things that matter to them most on a day to day basis. I think the cultures where there is less planning for an unknown future, but living day to day even with death around may create less anxiety. Of course religious beliefs may play a part too.
Death is an unknown and it is fear of the unknown and loss of continuity with a life and relationships that we have that perhaps cause fear and stop us making the best of our time in the here and now.If we have strong views on our end of life care then we have the opportunity now to make this known, informally and formally. It relieves the stress on those we leave behind. In a search for the holy grail of a cure we may miss opportunities to truly live.
Tom, you are right on. An end game plan is a necessary thought process. My were made and conveyed before my Myeloma diagnosis. When my doctor delivered the news, he said "You have an incurable but treatable cancer called Multiple Myeloma". I responded with, " incurable means terminal". He said " The 'T' word I used is 'treatable'." I knew I was in love. I live each day to the fullest until my end game plan comes into play.
Tom--excellent article. A topic I can really identify with but I do not talk about. Nobody wants to talk about it, including me. But I do think about it. My only "fear" is the immense sadness of knowing how life just goes on. So far, so good on my thoughts, as well as my disease progression. I guess we never know how we'll react as death gets nearer, treatment stop working etc.
I've been witness to several family members who passed away from terminal illness, and everybody reacts differently. But mostly I'm surprised at how they don't accept it very well in the last days. Even though they've written down their wishes, it seems they would have rewritten them on those last days to indicate they wanted more intervention.
I'd like to have the option of self administered euthanasia..."option" being the key word.
I'm sorry if this is hijacking your thread, but euthanasia seems very related.
Very well written article. And all the responses were well written too. Thank you everybody.
Aloha Stann,
Euthanasia is yet another tough subject. You never have to worry about "hijacking" a thread. Creating discussion and stimulating ideas is what this is all about to me.
While I don't think euthanasia is an option for me, I fully support every persons right to make this difficult decision for themselves. This is a good idea for another article.
I totally agree that as death comes closer many folks are driven by fear to want to "re-write" their intervention plans. I too have witnessed the death of a close friend who chose to fight up to the last moment. Her death is actually an inspiration to me to not fight the inevitable once it is indeed inevitable. Her struggles in her final days robbed her of a peaceful transition to death.
I am not a heroic or particularly brave man. I only hope that by talking about death and trying to understand and accept it that I will be more able to face it. None of us will know until we are there how exactly we will do. My goal is that by mental preparation it will be easier for me and also less traumatic for my family.
I was just diagnosed yesterday and I'm kind of numb. Trying to get my bearings. I have almost no symptoms -- only anemia and lack of energy. The hematologist spent all of 3 minutes with me, so I had no time to ask anything. I had already had a good bone survey and a pet scan that showed no cancer. He didn't say what stage and I didn't know to ask, but I assume Stage 1.
He wants to treat aggressively with Revlimid and Velcade. I'm older, late 60's, still working, but from what I'm reading the prognosis doesn't look that great. The women in my family have been very long-lived and I assumed I would be too. Maybe not.
I'm wondering if it's better to go into treatment for 6 months and get a few years before the next round of treatment, which might be debilitating, or simply live my life and go into hospice a little earlier. But that subject, which brings the question of death into play, makes others very uncomfortable.
I've already found that when I tell anyone that I'm not afraid to die, but I am afraid to live a medical life, in treatment for many of the years I might have left, they accuse me of not being positive enough or even of whining(!). I've already found out that most people out there do not consider mm a terminal disease. Even my hematologist talks about "curing" me and how easy it would be because we caught it so early.
The second you bring up death in this culture, you're accused of being morbid or giving up or not fighting. But the truth is, this disease will probably cut my life shorter than I was expecting, and I'm still (24 hours post dx) trying to adjust to that.
It is great to see real people talking about death. Yesterday I thought I had 20 years. Today, it seems, maybe 5-10. I want the years I do have left to be as good as possible and I'm not sure the recommended treatments can really provide that.
Aloha Anje,
First of all I am so sorry for your diagnosis. It is a scary and confusing time.
Second of all step away from the computer and take a deep breath or two. There is nothing about what you have described that needs you to make a decision right away. I actually wrote a column a few months back titled "Diagnosis is its Own Disease". You might look it up when you feel like it.
The gist of it is that you have a disease that is not now an emergency. Taking time to digest the ramifications will take a few months. There are a million things racing through your mind now. Being numb is normal. IT WILL GET EASIER! For now, learn a little bit about the disease and when you are ready find a doctor that you are comfortable with that can help guide you.
You have found one of the best places on the entire web to get an understanding of this disease. Look through the different sections of the Beacon and try not to get discouraged. Lots of us live long productive lives with myeloma.
Hang in there!
Aloha
Tom
Thank you, Tom. This topic is so important and is not discussed enough. I was the primary caregiver for my mom who has since passed away from myeloma, and personally, I did not want to talk about her death and details about her wishes because I just wanted to keep pressing on, and thought we had more time. I realize now I was in some sort of denial. I believed that if we just kept at it, we would be okay, so I completely understand the desire to look towards living and not death, and all the things you have to do and of which those who are left must take care. All I can say is that I talk about death and dying more now than before and I wish I talked about it with my mom so I could ensure that I fulfilled all of her wishes.
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