Photo: Fiona MacGinty
In January of 2007, I developed a mild stomach ache and general feeling of being unwell while at a Sunday brunch. Initially, the pain sat in the center of my abdomen just above my belly button, but gradually over the course of the day inched its way down into my right lower quadrant, causing me to wonder briefly if I’d developed acute appendicitis. However, by evening the pain had actually begun to improve so I dismissed the possibility; I’d never heard of case of appendicitis resolving on its own without surgery. But mindful of the adage that the physician who treats himself has a fool for a patient, the next day I asked one of my physician friends to examine me. When he did, he found a fullness he didn’t like in my right lower quadrant and ordered CT scan. To our mutual surprise, it showed that I had, in fact, developed acute appendicitis.
I saw a surgeon later that afternoon who began me on antibiotics and scheduled an elective laparscopic appendectomy, which he performed two days later. The surgery went well and I was back at home that night with a bloated stomach but minimal discomfort.
At 3 a.m., however, I awoke with projectile vomiting and after a particular violent episode briefly lost consciousness. Panicked, my wife called 911 and an ambulance delivered me back to the hospital where I was found to be anemic. My surgeon diagnosed an intra-abdominal bleed and began following my red blood cell count every few hours, hoping the bleeding would stop on its own. By late afternoon, however, it became clear that it wasn’t, so I was taken back to the operating room where the surgeon found and evacuated approximately 1.5 liters of free-flowing blood from inside my abdomen. All told, I’d bled out half of my blood volume over the course of sixteen hours. Over the next few days, however, my blood count stabilized and my strength returned, so I was sent home four days after I’d been admitted, slightly less bloated than I’d been after the first surgery but four units more full of a stranger’s blood.
Three weeks later, my wife and I took a four hour flight to Mexico—a vacation we’d planned to take in Cabo San Lucas prior to my illness—spent three days on the beach, and then flew back home.
Two days later, I developed diarrhea. Because I’d only had bottled water while in Mexico, I thought I’d contracted a viral gastroenteritis that would resolve on its own within a few days. While driving home a few days later, however, I developed right-sided chest pain. I called my physician friend who asked me to return immediately to the hospital to have a chest CT, which in short order showed I’d thrown a large pulmonary embolism. I was taken immediately to the emergency room and placed on intravenous blood thinners to prevent another clot from traveling to my lung and possibly killing me. Luckily, this time my hospital stay was uneventful, and I was ultimately discharged on an oral anti-coagulant called coumadin.
A week later, the diarrhea still hadn’t resolved, however, so a stool culture was sent for clostridium difficile. It came back positive, undoubtedly as a result of the antibiotics I’d been given prior to my first surgery, so I was started on Vancomycin. Then I developed an allergic reaction to the Vancomycin, so I was switched to Flagyl. Within a week the diarrhea resolved, but then a week later it returned. Relapses are common with clostridium difficile colitis, so I tried Flagyl again, this time with a probiotic called Florastor. The diarrhea resolved and never came back.
A week later, however, the nausea did. It was absolutely crippling—as was the anxiety that accompanied it. What could possibly be wrong now? I longed for the blissful ignorance of a non-medical mind that had no knowledge of all the terrible diseases I now thought I might have. I called my physician friend who suggested, after listening to my symptoms, that the nausea might be due to anxiety. I told him that idea hadn’t occurred to me, that I’d supposed the anxiety was present as a result of the nausea, not as its cause, but that I was open to the possibility he was right. The next day I had a conversation with a psychiatrist who diagnosed me with mild Post-Traumatic Stress Disorder (PTSD).
DENIAL OF DEATH
I’m always surprised by people who say they’re not afraid to die. Most are usually quick to point out they are afraid to die painfully—but not of the idea of no longer being alive. I continue to be mystified not only by this answer but by the number of people who give it. Though I can imagine there are indeed people who, because of their age, character, or religious beliefs, truly do feel this way, I’ve always wondered if that answer hides a denial so deeply seated it cannot be faced by most.
Certainly, this has been the case with me. I love being here and don’t want to leave. I’ve always spoken openly of my fear of death to anyone who’s ever asked (not that many have—I suppose even the question is uncomfortable for most), but I’ve rarely experienced moments where I actually felt afraid. Whenever I’ve tried wrapping my mind around the concept of my own demise—truly envisioned the world continuing on without me, the essence of what I am utterly gone forever—I’ve unearthed a fear so overwhelming my mind has been turned aside as if my imagination and the idea of my own end were two magnets of identical polarity, unwilling to meet no matter how hard I tried to make them.
THE SHATTERING OF A DELUSION
The true significance of my denial wasn’t made clear to me, however, until I was diagnosed with PTSD. The anxiety that began to envelop me at that point was of an entirely different order than I’d ever experienced before. It began to interfere with my ability to function, which made plain to me that what my brush with death—twice—had taken from me was my ability to believe I would never die. Knowing intellectually that death awaits us is quite clearly a different thing from believing it, much in the same way knowing intellectually gravity will make you fall is a different experience from actually swooning at the edge of a parapet at the top of tall building. Ultimately, being ill brought me to the realization, contrary to what I’d always believed in my heart, that there was nothing special about me at all. Like everyone else, I was only a piece of meat that would eventually spoil.
From that point forward, whenever I’d feel a minor twinge in my chest or develop a rash on my arms or my hand would shake for no reason I would become paralyzed with anxiety. Even though I recognized intellectually that my reaction was overblown, every new random symptom I felt caused my doctor’s brain to leap to horrifying conclusions simply because I now knew in a way I hadn’t before that bad things could actually happen to me. I felt like one of my long-time patients who for as long as I’ve known him has been consumed by an anxiety so great he’d become like a child in his need for constant reassurance that he would be all right. His anxiety had made him inconsolable and his life a joyless nightmare.
PTSD is often diagnosed in men (and now women) who return from the battlefield, women who’ve been raped, people who witnessed the Twin Towers come down on 9/11—in short, in anyone who either has an intense traumatic experience themselves or witnesses one occurring to someone else. In my view—completely unsubstantiated by any psychiatric literature, I should point out—PTSD results when a person has their deluded belief that they’re going to live forever stripped away from them.
WHAT TO DO NEXT
I’d always considered the shattering of delusion in my life to be a good thing, something that’s always brought me more happiness rather than less. And yet here seemed to be an example that contradicted that rule, for around the time I was diagnosed with PTSD I was surely suffering to a degree I never had. Frankly, I was happier before living in denial.
Over time, though, the crippling anxiety of PTSD resolved and I returned to my previous level of functioning. However, even minor injuries or transient symptoms that I would have ignored before now stir up vague feelings of worry. I remain acutely aware to this day that my ability to believe in my invulnerability has been irrevocably ruined.
I’ve decided, however, that this is a good thing: I’ve been given the opportunity to challenge my fear of death without actually having to be actively dying. Many others aren’t so lucky. I began practicing Nichiren Buddhism 20 years ago because I was intrigued by the notion that enlightenment might actually be a real thing, attainable if only the correct path was followed. I’ve continued because I’ve had experiences with the practice that have convinced me it has real power to shatter delusions about life. But now more than an intellectual curiosity, my desire for enlightenment has become synonymous with my desire to relieve myself of delusions about death.
For me, three things are certain: First, my experiences with Buddhism so far have inclined me to think that enlightenment is a real thing, and that it might be the solution to my problem with fear of death. But, second, for me to become convinced that life is eternal (“there is no beginning called birth or ending called death”), I must have an experience that proves it to me beyond a shadow of a doubt. I need to know it the way I know gravity is real. I must confess I can’t today even conceive of what that experience could be. Yet I must remember that every time I’ve gained real wisdom from my Buddhist practice and become genuinely happier, it’s always come as a result of having an experience I could never have predicted. And lastly, because I hope the establishment of indestructible happiness based on a belief in the eternity of life is possible, I must remain on guard against the seductive tendency to convince myself of it. Belief that arises from a desire to believe is usually, in my experience, too flimsy to withstand a genuine challenge. And I can think of no more genuine a challenge to a belief in life after death (whether through reincarnation or an ascension to Heaven or anything else) than the actual imminent approach of death itself.
I fully recognize that my current belief about death—that it is truly the final end of the self—is likely to be correct. Which makes me wonder if I wouldn’t be better off throwing my energies into re-embracing denial and simply accepting that when it comes my time to die, if I’m given the chance to see it coming, I’ll suffer however many moments, hours, days, or weeks of fear there are to suffer and then be granted a final release.
If only I could. Once a delusion has been shattered, I’ve found there’s no going back. And even if there were, at some point I’m certain to be re-confronted with a denial-eradicating sickness or injury. Everyone will. Depending on your current life stage this might not seem like a pressing issue. But shouldn’t it be? An experience like mine could become yours at any moment. And even more desirable than being able to die peacefully is being able to live fearlessly. In fact, one of the supposed benefits of manifesting the life-condition of the Buddha is freedom from all fear.
I’ve tried to resolve my fear of death intellectually and come to the conclusion that it can’t be done, at least not by me. Some kind of practice that actually has the power to awaken me to the truth is required (assuming, of course, the truth ends up being what I hope it to be).
Thus, my grand experiment continues. What about yours?
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This is the best of all so far. You should get it published.
All I can say is wow!!!!!!!!! This is great!
Janet is right! You should have this published. The mystery of death is something that everyone wonders about, whether one believes in re-incarnation or life after death. Could it be that the life after death spoken of is actually that you live on in the life of your children and grandchildren?
This is a great post, Alex.
I’ve been pretty certain that I may have suffered from PTSD after a particularly bad breakup…looking back, it’s entirely possible (though embarrassing that something like a breakup could cause such a thing) and why it lasted so long.
And it is a shattering of a delusion, we like to believe we know exactly how our life will play out, but no one really envisions the end time…because it’s too hard for us to really look straight at. We’re blinded by the self, which doesn’t want it to end …
Anyway, nice writing, sir.
This is a really interesting piece—you have had life experiences which really lend themselves to writing interesting articles! I don’t know much about your particular kind of Buddhism but I was surprised to read “I fully recognize that my current belief about death—that it is truly the final end of the self—is likely to be correct.” I know you said “self” and not “soul” but how does this fit with the Buddhist ideas on reincarnation?
You should consult the books by Irvin Yalom including his latest “Staring at the Sun: Overcoming the Terror of Death”. Dr. Yalom approaches the problems of death anxiety from an atheist, philosophical, and rational point of view. He provides practical methods for alleviating death anxiety as well as solid philosophical grounding for viewing death without terror, including Epicurus’ quote, “Where I am, death is not. Where death is, I am not. Why fear death?” I know Irv myself and a more humane man who has worked harder or more courageously to alleviate humans’ suffering and give them guidance on how to live their lives fully and happily cannot be found. As he notes in the “Staring at the Sun”: leave nothing for death but a burned out castle.
I read your piece from linking from the nurse Theresa’s story.
What if physical death is the end of the self? As far as I know I didn’t exist before my birth and I don’t dwell on that. I have spent time dwelling on the fact of death…or the other end of the life experience that began with birth.
I began thinking about this pretty early because I had a grandmother I loved dearly and I knew she was terrified about death. She had lost her first child when he was three and her second child at 6 months. My mother was an unplanned pregnancy and was born eight years later. The baby had died after being taken to see Santa Clause and my grandmother always grieved most at Christmas season. I still don’t like Christmas because of the dark cloud that hovered over us all every season.
I couldn’t comprehend my grandmother’s fear. As a mother I could understand her grief and I did fear losing a child to death. It has to be worse to lose a child than to die oneself. And even harder, I’m sure, to die before one’s children are grown.
Once my children were grown, I was thankful we had all survived. I have loved being part of my grandchildren’s lives. I’m newly married at the age of 71 and look forward to sharing these closing years of my life with my long time best friend who is now my husband.
I have lived a good life. I enjoy life and wish to continue life so long as my health is reasonably good and my mind is intact. My mother and her father both died of Allzheimers. I no longer fear that Alzheimers is likely to be my fate, but if it were you can be sure I would exit this life before it was too late and I became a living vegetable.
I was raised to believe we live on the in lives we’ve touched and then through to lives those people touch, etc. Maybe there is eternal life in some form, perhaps as stardust, or if we’re lucky we can recycle ourselves and contribute to ongoing life.
I don’t think I’m in denial. I can understand fearing pain, as I’ve had a fair share of pain and of illness. My worst fear was when diagnosed with rheumatoid arthritis before it had come under control. I was bedridden two years and came to understand how much worse to have a disease that can steal your life without giving you the blessed relief of death.
As an adult I have spent a lot of time in Mexico and have also lived long term in a village. Here death is intimate, the body lies in its coffin in the home. Family and friends pay respects and sit vigil with the family. Someone stays at all times with family members, taking turns throughout the night. All the family away from home fly in to be together (I’ve seen this twice in one family). In the morning the coffin is moved to the church for mass. Following the mass the family follows the hearse on foot to the cemetery. There is much angst but no denial of the finality of death. In earlier days when bodies were buried in the ground instead of above ground in crypts, family members dug the grave, removing bones of earlier burials.
In other words the death is part of life and is experienced intensely by the family. The corpse is not handed off to a funeral parlor leaving professionals to make all the arrangements.
While I am sure there will always be persons who fear death under any circumstances, I think the greater problem in the United States is a great denial of death and a distancing from death.
As a corollary let me add I think the great expense incurred in preventing death in those over the age of 60 or 65 is wasteful and sinful. We need to concentrate the funds for the men and women who are parents of young children.
We will have to come to terms with rationing health services, whether we like it or not. Death is real and life is better lived when one knows one’s vulnerability and lives as if each day may well be the last.
Thank you for sharing your own intimate feelings with your readership.
Carolyn Africa
I enjoyed this article as well. I am 41 and watched my mother die in January 2008 from a sudden illness. Her death also shattered my denial-based assumptions that we would all die…someday, not now (not ever). I also continue to struggle with missing someone who is gone forever. I have been diagnosed with mild PTSD, which I believe stems from my forced acceptance of my own mortality. I have been on a religious journey, searching for something I believe in my heart rather than believe out of fear of 1) hell or 2) nothingness. I had to face down my fears and peel them to the core before I could find spiritual truth. I’m still looking and wondering…
This is an amazing article Alex. One of the benefits of Buddhism for me is that it has helped me see life and death in a much different way and VERY interconnected.
Carolyn, I’m in complete agreement with you. I know death is the end, and I do accept it. It doesn’t mean I’m never ever afraid of it (I’ve sometimes had that cold feeling in the pit of my stomach from thinking about NOT-being since I was a small child) but that I accept it’ll happen one day, both intellectually and emotionally. I’ve been trying to live a useful, varied life, and have, at times, actually suceeded! ;->
Whenever I hear someone ask, “Am I going to die?” (usually, on a TV show of a TV doctor), I always think the proper answer is, “Yes, but probably not immediately.”
This is too heavy and complex for me. I think the fear of death is more a function of age and the fullness of one’s life. I’m 73 and have been fortunate to have dodged a couple of life threatening events or diseases. They frightened me at the time–not the possibility of dying–but the fear of being incapacitated and a burden to others. That same fear exists now. I have no fear of death itself; just concern that the process not be lengthy, stressful, and painful to those who care for me. An important function at my age is to “have my house in order” so that no personal relationship or business be left unfinished or unclear. That remains an ongoing activity that gives me purpose at my stage of life.
There aren’t many other items of interest I have to do before I leave this earth for the next stage of my life cycle.
Laurie,
That’s the answer House has been giving everybody, his patients and his TV audience, for the last five years. Reality can be brutal, and Carolyn has described it with a loving candor. Hope others get it, too.
I’ve always admired people who have such a strong sense of faith that they find comfort in the thought of an afterlife. That this is just part of our journey. But I’m not one of those people. I think we’d all sleep better and worry less if we just knew.
That’s why I like yoga. It reminds me to be more present. The philosophy and the physical. The only problem is I would need to go every day three times a day to really get out of my own head!
What is wrong with death followed by nothingness?
Alex, I just found your blog and am so intrigued, because much of what you’re writing about are things that I’m pondering myself.
I have to say that I used to be afraid of death, but after experiencing my son die just hours after he was born, I’m not so afraid of it anymore because I hope and believe that I’ll see him again in another life. But I admit I struggle with maintaining that hope and belief without any proof.
I also the fear of death is also tied up in the sense of “missing,” if possible, those whom you love and who need you, those whom you leave behind in this life, as well as the worry of how they will adapt after you’re gone.
Re: Carolyn’s comments, I found it heartening how death is handled in Mexico; I wish it was more like that here in the US. There really is too much distancing from death here in the US. Since my son died, I can (and want!) to talk about death quite a bit but it’s not the “topic du jour” among people who I socialize with.
Thanks to everyone who has shared their thoughts on this topic.
Dr. Lickerman, I found your article through a link at the the NY Times Well and wanted to thank you for your interesting and very reassuring thoughts. A few months ago, I was diagnosed with a mild case of post-operative, iatrogenic PTSD. I had spent the previous 9 years struggling with an undiagnosed heart condition and was experiencing significantly reduced abilities to function (in my case, as an engineer, parent, wife, daughter, and friend). I was somewhat relieved when the PTSD diagnosis finally came. In past few months, I have had some talk therapy and done lots of reading on the condition, but your article really touched me.
I just discovered your site today and have devoured everything that’s available…I love your mind and the commentary…I can’t wait to read and reflect on what comes next…thank you.
Alex—very thoughtful post. Thank you. I am sort of an amateur death philosopher. The process began in earnest when I was 12 and read The Diary of Ann Frank. Learning about the Holocaust humbled me and I began realizing on a deeper level that I am going to die. For real. Fortunately, I do have a strong faith in God and in heaven. But that doesn’t mean I have never doubted. When I have doubted whether or not there is a heaven, I have often thought, “Okay, so what if there is not? There is nothing you can do about it.” It makes my life happier in a deeply profound way to believe in heaven and to believe that we will be reunited with our loved ones there. My father and I were very close. Best buddies. He died in 2007 after a long illness. He often spoke of and joked about his death. Once after a heart attack, he joked, “I thought I was a goner and you’d be visiting me in Warwick (where the cemetery is).” Now, I do visit him in Warwick and it is so weird…it has led me to feel very deep in the heart, “Oh, man. We are all so going to die. . .”
Alex,
Got to the blog from the NYT post. I remember seeing you in the ER that night and ordering a CBC b/c you were so tachycardic and diaphoretic (like a bleeding trauma victim rather than someone with poor post-op pain control). But to read again after a few years about how much you went through after what we so cavalierly call a “routine operation” is powerful. I hope more surgeons read this. I also hope that you and the family are doing well.
That was an extraordinary piece of writing and I thoroughly enjoyed it. Thank you. When one taps into the reality of the finality of death for the first time as a cognizant human being, it seems as though he/she sees beyond the edge of life; it changes a person. And when incomprehensible illnesses (aren’t they all to a certain extent?) claim the body, it opens another aspect of reality. I too was trained as a physician, now work as a writer, and have had some frightening medical issues in which I cursed my knowledge, yet also was grateful for it. I remember as a child lying in bed and trying to comprehend the meaning of FOREVER and EVER and EVER and EVER continuing after I died…just endless black space without me on the earth. The fear is incredible. So I choose, for my own sanity, to believe in something more pleasant, a reincarnation, a peaceful eternity…because thinking of the alternative is too difficult. What is the harm in believing–(rhetorical question)?
Thanks again for your thoughts.
I think that this essay helped me (or validated my feelings/fear of death) more than 2 years of therapy after a traumatic experience w/c.diff that occurred when I was 30 (I still have stomach problems 4 years later). My therapist, in an off-hand way, mentioned that I might have a mild case of PTSD when I explained to him my absolute fear of stomach/GI illnesses. When he asked why I was so scared—since I would just get better if I got sick—and I responded that I was scared that I would die—his response was, “What’s so bad about dying?” I understand what he was trying to do, but it was absolutely unhelpful and felt dismissive.
Things have improved for me with the help of Xanax—which actually really helped my stomach. But I’m tapering off of it, and hope that I don’t revert to that panicky, obsessive girl that I became after my hospitalization.
And yes, I know that I need to find a different therapist. Maybe an 80-yr-old Freudian wasn’t the best fit for me.
Best regards—and good luck w/your grand experiment.
Alex,
I just finished reading your post and it brought tears to my eyes. That part about your patient whose life is overtaken by anxiety and fear was my story once. For a year or so I was paralyzed with fear; it was so intense that I cannot remember anything from that time period other than being terrified and waiting for something to happen to me. Of course nothing did, and I feel better now; I got my life back. But just like you, I do know it’s there and every ache or pain reminds me of it and it’s okay I guess. Dying is what happens to all of us; we were born and eventually will go; this is what I know, but what I also know is that I don’t want to be thinking about this today. I choose to be happy, I choose to enjoy my days, I choose to have great times with family and try to focus on right now. I know I can potentially increase my days by taking care of myself physically and spiritually and that’s what I choose to do. I take time to learn my body and when it aches I try to keep it cool. Instead of turning on the panic mode I pause, take a deep breath, and reason. This is how I deal. I don’t think this is something you can just get over: as life goes on there are triggers that go off, family members passing away, friends and so on, but if you focus on making your life meaningful I think it might not be that terrifying to enter the unknown in the end…thank you for sharing your thoughts.
Alex-
This post is very old, but it’s a specific issue that I’ve been dealing with lately. The fear of death, especially one that inhibits daily function significantly, is something that’s very difficult to negotiate. Unlike irrational fears and anxieties (fear of snakes or impossible scenarios), this one is based on something that certainly is going to happen, and right soon. If one assumes that there is no afterlife (which doesn’t necessitate atheism, but the two often coincide), then death is indeed worth being very upset over. All other conditions in life are in the field of time. Death isn’t.
Though I am only 21, I already feel overwhelmed by how much time has passed. There is a wonderful saying about the hours: Omnes vulnerant, ultima necat (all wound, the last kills). Very few people seem conscious of how little time they have. Being 21, I have maybe around 20,000 days of life left. How few!
I don’t know if you still struggle with this—it seems doubtful anyone could ever really stop—but there are some things that comfort me. One is to feel privileged rather than cursed. Yes, non-being IS terrifying beyond reckoning, but after all the things you’ve seen and experienced, would you rather not have lived? Some people say life (or every day), is a gift. That’s not true. What we have on our hands is on loan. The atoms that comprise us have been traveling for 13 billion years, and for one very brief moment they coalesced into your consciousness, creating a miracle that has never existed before and will never exist again. This is not a matter of gathering rosebuds while ye may, but rather a perspective; a perspective that is thankful for having been rather than troubled by the inevitably not-being.
The other thing that comforts me, oddly enough, is the very fact that death is inevitable. It is horrible to consider non-being, to be sure, but it will come in its time. There is a wonderful stanza from the poet Algernon Sinburne:
“From too much love of living
From hopes and fears set free
We thank with brief thanksgiving
Whatever gods may be
That no life lives for ever;
That dead men rise up never;
That even the weariest river
Winds somewhere safe to sea.”
It is important, I think, to consider how small we are, and how little we can comprehend. We would never be able to “know,” anything outside of our universe and sense experience, even and particularly God or the afterlife. What we have, then, is this life, and at least a little bit of wisdom accumulated in the face of death to live it decently. From whence we came, and to where we go, that we cannot rightly know.
Of course if you don’t want to accept death, there are plenty of plucky cranks, futurists and scientists trying to solve the problem. With your medical training, they’d be happy to have you on board:
http://en.wikipedia.org/wiki/Cryonics
http://en.wikipedia.org/wiki/Aubrey_de_grey
http://en.wikipedia.org/wiki/Ray_kurzweil
http://www.telegraph.co.uk/health/healthnews/3489881/Scientists-take-a-step-closer-to-an-elixir-of-youth.html
Cheers,
Chase
I just discoverd this blog and it’s very timely for me since I’m facing surgery this summer. In the past, when I was younger, every time I faced surgery I just thought, “well, here goes nothing!” and took my chances lightly. This time, at middle age, I feel differently about it and value my life more highly.
Even though I feel like I’ve had a full life up to now and I have peace of mind, I don’t feel prepared to die in a stupid, senseless way. The news about swine flu is intensifying my feelings.
Chase Cross–that is one of my favorite quotes from Swinburne of all time–I always thought it encapsulated the way I felt about death. If I believed in tombstones, I would want that written on mine!
I am in awe of your humility and honesty in confronting your fear, Alex. I am equally mindblown by the similar humble posts from your readers. I found you through the NYTimes. I will now continue to borrow from your wisdom and the wisdom of your readers.
I have had a long and generous life, too. I had a near death experience once—like you, I nearly bled out after childbirth. But unlike you, I found it peaceful. So, from that I learned that it CAN be peaceful…
I have a daughter who was suicidal for a time, and from that “death” experience, I learned that I had to let go—that I could not prevent death if she really wanted it.
I have baptized 4 dying babies over the past 2 years in the NICU where I work. I don’t know exactly why I am always being asked, in the middle of the night, to baptize. Again, the letting-go lesson…
It is only when I think about my son who will never live independently that I resist or fear my own death. I find that I don’t want to leave my son to the unknown. I want to be his rock.
I let go of someone whom I loved dearly and would have married. My response was entirely physical: I couldn’t eat and there was the feeling of falling into a great depth beneath my feet…and it went on a long time. Months. There was no mind over matter. I was simply physically falling and starving.
I haven’t heard anyone mention coping by living one day at a time—as a very specific strategy. I find I have had all other options fall away, and am left living one day at a time as a last resort.
There may or may not be a Hereafter. I don’t know and I find I don’t need to know/believe. Religious doctrine about eternity and heaven has failed in my life, and I don’t count on it. Buddhist principles are the closest to comfort: detachment, letting-go, in particular. I have not had to work hard for these (with a practice of meditation, for example)—these have just been given to me as a gift.
I am just a grain of sand on the beach—except when I think of my son to whom I am the prime mover. As a grain of sand, I am willing to be swept away (and return to the shore some day perhaps). I just wish I knew that my son would be well taken care of.
Having read some of the fascinating work of Peter Levine, “Healing Trauma,” Foundation for Human Enrichment, and Somatic Experiencing, I suggest that the PTSD you are experiencing may be rooted in the body rather than the mind. Check out his work—it is fascinating.
Also, for another perspective on life between life read the work of psychologist and hypnotherapist Michael Newton, “Journey of Souls” and “Destiny of Souls.” Also fascinating.
I have done many web searches on the fear of death, hoping to find a way to rid myself of the overwhelming feelings of panic that I sometimes experience when I think of my eventual death. I can make myself just as crazy if I dwell on the question, “Where is the end of the universe?” My brain just can’t get around it. I came to your blog not through a search but by coincidence. It helps to know that I am not alone having these feelings. Like you and others here, I am also searching spiritually, and I have found many answers that seem to “feel right,” but I still go back and forth about death and what might or might not happen afterward.
I am concerned in that my fourteen-year-old son also has this fear of death. I had not talked to him about my experiences nor have I modeled it to him, as far as I can recall, but the panic was there. I asked him what was was going on and I am thankful that he was able to talk to me about what he was experiencing. I told him to try to slow his breathing and to feel the world around him with all his senses. It can happen at the younger end of the spectrum, too. My son had a serious surgery when he was seven and may face more in the future. He knows that his medical condition is potentially life-threatening, if not life-changing. And then his grandmother (my mother) died not too long ago, also. Any suggestions for how to support my son in dealing with his feelings when I am not to sure about it myself?
Well, shoot. I thought I had death figured out. This one time, I slept over at a friend’s house before we went skiing the next day. He keeps it at a rather cold temperature, so when we woke up to go skiing, he asked me how I slept and whether the cold had bothered me. I replied, “No, I was asleep, I never noticed it.” I then got hit by a realization that didn’t quite shake me but made me think to myself—at least on an intellectual level—that this is what death is like. All the experiences of life cease for a time when we are unconscious or sleeping, unless they’re disturbing enough to wake us up. I thought I was done with my fear of death, since, although it is inevitable, it is not so bad. It is merely a never-ceasing sleep, and if I could deal with that, then I could deal with death.
Yet after reading your post, I’m pretty sure that while I, like you, have realized it on an intellectual level, I have not had a very-near brush with death (I did have an appendectomy once when I was 12, but it went rather smoothly). Your article got me thinking that I’ll probably need to get very close with death to not only further appreciate life, but to also experience the removal of the delusion that I will live forever.
I’m only 22, so this delusion is very fixed in my brain, like it is for most if not all young people. The closest I could ever come to death would probably an intense experience I read about in a book entitled, “Buddha in Your Backpack,” a guide that introduced teens to Buddhism. It stressed that once you attain a certain level of proficiency in meditation, you could undergo death meditation. I don’t have the chapter with me, but the procedure would be to meditate and then imagine that it is your last day alive. You draw your final breaths and contemplate that right now, you are going to die. You slow your breathing until SOMETHING hits you. Naturally, we remain alive, but come very close to a subconscious understanding about death.
My meditation proficiency is still in its infancy, but continual practice does me a lot of good. I indulge in cannabis more than I’m comfortable admitting to most of my friends (the ones who are on the right track, not the ones who support my bad habit), and recently meditation has helped me significantly reduce my consumption. I wouldn’t call myself Buddhist, at least in terms of spirituality. I have a very scientific, logical view of the world and have too much of an emotional connection to the concepts of existentialism to change my worldview to the degree that I believe in the paranormal. However, the benefits of meditation, chanting, and the logical accuracy of Buddhism always struck me as very true wisdom, and so while I may not bow with incense in my hands, I do know that most of the tenets espoused by Buddhists about better ways to live are right and true.
Thank you for writing your blog; you demonstrate clear intellect, logical thinking, and a willingness to consider every aspect of any scenario. I’ve bookmarked it and read nearly everything you’ve written. The high level of wisdom and lack of an overinflated ego you posses is extremely rare these days, especially on the internet.
Kind regards,
Henry Benjamin
I’m sorry you had such a horrible experience! Sometimes I think about how fragile life is and it seems like a miracle that we live long enough to have these rich inter-twined lives that we have. I have been in poor health since 1999; I was very afraid of death at first. One thing that made me more at peace with it was reading Charles de Lint’s novels—that probably sounds weird. I was thinking if I could isolate what it is about them, and I’m not sure I can—but there is a lot of philosophy in them, and he includes a lot of North American native philosophy. Many other posters mentioned the Mexican attitude towards death—I think other cultures may deal better. His characters have also learned who they are inside through hardship and experience.
I find small things to enjoy every day—the sound of the wind on the leaves, the eternal beauty of the ocean. This helps too. I will not let death steal my joy.
Just happened on your blog and Overcoming The Fear Of Death & really appreciate your thoughtfulness. Oddly, I’m glad to know someone else experiences this terror of oblivion. I asked my husband why it doesn’t seem to bother him and he answered, “When I’m dead, I won’t care.” I guess our agony about non-existence is all experienced in the present. So I try to relegate those thoughts to a single corner of my brain and fill the rest of my head with conscious instructions to enjoy every day of life while I have it. Not always easy with a job, tax notices, bills, injustice in the world. Some days it’s just appreciating someone’s warm hug, a bird song, the ever-changing art gallery we call a sky. The upside is that all problems seem small—compared to death anyway—and fall away like rain.
This article speaks to me, so I wanted to offer my own experience.
I first felt “the fear of death” during spring break of my sophomore year in college. I agree that Freud was wrong in thinking we were all born with a death wish—I think most people are not afraid of death simply because they can’t, or refuse to, imagine it. Almost by definition, you can’t imagine death—because either you believe in God, so death is just a transition (so “death” for you is not really death), or you don’t, so death is a state of nonexistence, which can’t be imagined.
In my case, the fear wasn’t the result of a brush with death—it was the result of infinity.
My line of imaginative reasoning was this—space MUST be infinite. Travel at the speed of light a trillion years in one direction, and you can because there’s no wall or anything. And even if there were a wall, what’s behind it? More space. You can continue this forever and never reach the end. Therefore, space is infinite.
The same can be said for time. Go back a trillion years into the past, and yet there’s obviously a trillion years before that—and so on. Time MUST be infinite (incidentally, I realized, even from the beginning, that there must be paradox here—time can’t be infinite, but somehow it must be—and space can’t be infinite, yet somehow it must be)
Just following either line of reasoning and actually imagining the infinity brought on the fear of death. I could do it on a sunny day at a picnic with the best of friends, suffer this paralyzing anxiety, like suffocation.
Over the years, I had to consciously stop myself any time I started thinking about either of these twin infinities because I could feel the tightening of my heart and the tingling anticipation of the dread.
This may all sound very odd to anyone else. But what’s perhaps odder still is that I somehow resolved my fear (it’s too early to be certain, though).
Since infinity brought on my fear of death, I kept my eyes open for any news on infinity of time or space. I slowly figured out, mainly through astrophysics articles, that these infinities are actually illusions.
In a very real sense, neither time nor space actually exists without matter. “Space” without matter is simply nothingness—and an infinity of nothingness is still not an infinity (I think of it this way—the number 1.0 has an infinity of zeros after the decimal place, yet it’s still a finite number). Similarly, time IS the rate at which events occur—but if no matter exists, then nothing occurs, so there is no time. Matter has not always existed (at least, as far as physicists can tell)—don’t ask where it came from, no one can figure that out yet—so neither time or space has always existed. Before the Big Bang (if that’s how matter came into existence), there WAS no time, nor space. The universe (and with it, time and space) was born.
On the other end, once all matter dies out (and apparently, even subnuclear particles like protons will, one day far into the future, spontaneously decay back into nothingness—which implies that all energy, heat, too, will eventually decay) space and time will cease to exist too. This is the death of the universe. So, neither time nor space is actually infinite in either direction, they only appear so because, and back to the nonexistence thing, human minds can’t imagine nothingness.
I think that’s why I conflated infinity with death—somehow, the one was the closest I could get to imagining the other. Ironically, finally understanding (in my own limited way) that the illusion of infinity is actually hiding the reality of nonexistence, freed me from that fear.
I offer this as my own personal resolution of my fear of death. I realize I probably make no sense, but I encourage anyone paralyzed by this fear to pursue their own understanding of infinity, and (hopefully) free themselves of this fear by realizing that there is no infinity (which is, in a way, accepting the inevitability of death).
Oh man, I just wandered into your blog from God knows where and was reading with fascination. I was hoping you were going to end with the “ultimate” answer and then my hopes were dashed (now laughing at my foolishness).
As a 41 year-old male striving for a second career in medicine (finally) as an RN or a PA and volunteering much at the local hospital, my realization of the unavoidability of death seems to be taking hold. I believe I have found something here in your blog that resonates with me. I will return often. Thank you for this.
I read your article (as well as a majority of the comments) and I wanted to share my experience.
In September of 2005, I think it was (my memory is shoddy at best), I got a phone call from my brother. Some time before this phone call my father had gone to the hospital to be tested for several illnesses because he was feeling tired and his flesh was actually turning a yellowing color.
My brother was calling to tell me my father’s diagnosis: blood cancer, also called leukemia. I literally stopped talking, stopped listening…I stared into the distance at nothing. My girlfriend asked me what was wrong and I didn’t look at her or answer. After moments passed I dropped the phone and latched on to the nearest wall and just began crying uncontrollably. My head was spinning, my stomach was sick and in knots. I felt as if my own life was about to end…I couldn’t fathom my father being deathly ill.
My girlfriend took the phone and told my brother how I reacted. He immediately came over to my apartment with his wife and along with my girlfriend, the three of them helped me gather my things to head to the hospital to see my father.
The hospital visits in the next few weeks weren’t too bad, but every day my father got thinner and thinner…and sicker. The blood transfusions were keeping him alive but draining his life from him, as were the other cancer treatments.
After a few months my father was moved to a specialist hospital in Boston where they cared for him intensely and started him on an experimental drug for cancer. Finally my father received a bone marrow transplant.
During these 16 or so months of treatments my life went on as usual and by the end of my father’s second year of treatment I had rarely thought about him dying anymore. I told myself he’d live and that everything would be okay.
Before long I got a phone call—my father was in complete remission (he had fought cancer and actually won). This miracle assured me more so than ever that “everything would be okay, hopefully forever.”
After 2 more months my father finished physical therapy and was living back home with my mother. I rarely visited my parents and, since I am often ill with some sort of cold or some mild sickness, I didn’t want to get my father sick, so i visited even less.
My father finally started driving again and he had even come to my apartment one day to give me a ride to work because my car died (I had called my mother to ask her to do it—some how my father came and I was very upset about this fact, and I still am although I have never said anything to my mother and probably never will).
A few weeks later I discovered my father started smoking again (he didn’t have lung cancer, but it still sure isn’t a good thing to do after a fight with cancer).
My father was immunocompromised and this behavior actually made me angry as well and I told him how mad I was, though he brushed off the comment. My mother was angry when she found out too…no, I didn’t tell her either.
About 6 months after my father recovered from cancer he fell ill again. He had developed double pneumonia (that means he had an infection in both of his lungs).
The pneumonia was fungal and it would be almost impossible for his body to fight it with or without drugs. Before long he got so bad he couldn’t breathe at all without machines and barely with them. They even put a tube in his throat so he could breathe and talk, but by this time he was so sick he couldn’t talk. He got worse and worse until one day my family was summoned to the hospital to sign papers to agree to take him off the life support—the hospital had given up on trying to save him…they said he was in too much pain and the damage was irreversible. He was going to die.
I felt like hell and refused to go, but again I was forced to go by my family. I was more angry than I was scared or sad this time. When we got to the hospital we spent some time with him before signing the papers…he was alive well enough to hear. My mother told him she loved him and he actually mustered the strength to say the first words he’d said his whole stay at the hospital. “I love you” he whispered with all his strength.
After about twenty minutes my mom was stressed and needed a cigarette and one of my brothers went outside with her to talk.
My other two brothers had to go to work and left me in the waiting room alone (all of our girlfriends/wives were at work also).
I sat in the waiting room loathing this whole experience when suddenly a pair of nurses barged out of the ICU saying:
“Are you here for Tony Johnson?”
“Yes,” I answered.
“He is actively going; someone needs to be with him.”
The nurse touched my arm and guided me to my father and literally put his hand in mine. I kept telling him I loved him and I fought the urge to beg him not to go. I said I will always love you dad, you are my hero and you always will be.
He stared at me and I could see the life leaving his eyes, his mouth wide open as if in either disbelief or trying to speak or maybe both…it pained me so much to watch him go like that and for him to see me last…holding my father’s hand and watching him die and I was only 20 years old, barely an adult myself. I am the youngest of my family and I think it unfair that I had to watch him go.
After this experience I was depressed for a few months and then I was fine, until recently. The last few weeks I have been paralyzed with the fear of my own death and it’s been years since his death. Why am I experiencing this on such a delay? I don’t know but I can say I know for a fact the experience of both losing my father and being the one there and watching him die was earth shattering and destroyed my confidence and caused me such a deep depression that nothing can get it out of my mind for more than a few minutes. I can’t function like this and I feel myself ceasing to care about others around me. I am distancing myself from my girlfriend and keeping a distance between myself and others. I am tired of feeling like this and I don’t know what to do about it—I have no money for doctors or therapy and for someone physically fit and young where I live it takes between 2 years and forever to get any kind of assistance or free counseling.
To sum it up, I understand the fear of death and am still currently experiencing it. It is actively and currently destroying my life and my future and sometimes I don’t even care that it is because in the end I’m headed to the same fate no matter what—at least I think that way.
Truly what used to cause me to lead a good life was the belief that the life I lead would affect my afterlife or at least the lives of those I would succeed, but now I don’t care about that. I just don’t want to die.
Alex,
It seems like every waking moment I feel myself nearing death, as if death is not only imminent but seeking me. I fear the non-existence and blackness of unfathomable nothingness as it envelopes me, or what was me, so completely and utterly. I am absolutely devastated by the thought of becoming nothing or ceasing to be something. What could nothingness possibly be like? I fear it more than anything. The pain and the act of dying does not scare me a fraction of the amount that this fear of nothingness scares me. I shudder at the thought, and unfortunately the thought keeps coming more and more on its own. I am sad to say I have sought therapy and council and there are no places around here willing to see me. They have me fill out papers because I have no to low income and they tell me I am too physically and mentally fit to require the help I seek, but I am not. I am “sane” sure, but this fear is attacking the very sanity I am failing to protect on my own. I fear more than death living my life afraid of death and maybe just maybe if I could get the help I needed then I may be able to focus on the things I should be doing in my life or the things I want to do. I have been being told I cannot get low income therapy since I was 18 and I’m not getting any younger (or healthier).
I myself also have a number of health problems that I cannot afford to take care of and this makes me worried about dying at a young age. This is really becoming a very serious issue; it’s becoming the only issue that I care about at all and that in and of itself is a big problem.
Hi,
I just Stumbled on your blog this morning and enjoyed this article very much. I realize too much time has lapsed for you to give this a lot of attention, but there are two comments I’d like to share, for what they’re worth.
First, this is a topic I struggle with tremendously, and while I have found no satisfying resolution, it has occurred to me that those of us who OWN the inevitability of our death are the lucky ones. We are the ones most likely to value and appreciate and make the most of our time. Shattering delusions and ever-increasing self-awareness is cold comfort, but that is the only comfort I find myself able to be interested in.
Second, here is what I’ve gleaned from a decade or so of studying Buddhist philosophy. Fear of death is an attachment, and attachment causes suffering; this is the First Noble Truth. The way to overcome fear of death is to overcome attachment. How do we do that? By–and this is my intellectual understanding, not my emotional experience (yet)–understanding the True Nature of life, the universe, and everything, which is that only Emptiness (aka Nirvana, Heaven, etc.) is permanent, but that we are all manifestations of Emptiness. Thus I will continue, but as Emptiness, not as Kitty, because the body (and therefore the ego) is impermanent.
I think that from the perspective of consciousness/ego, we tend to look at the issue backwards (how could we do otherwise), and that it’s more the case that my ego (this life) is a temporary condition superimposed on Emptiness, which is my True Nature, and that “enlightenment” is little more than realizing this.
I read a great little book recently called What Makes You Not a Buddhist, by Dzongsar Jamyang Khyentse, a Tibetan monk. In it he tells the story about how the Buddha’s brush with death brought him to his realization about the True Nature of life. The Buddha struggled with all the same issues as in your post and on so many of our minds (that is, if we’re lucky ;->). The only difference is that the Buddha sat with it until he fully realized the truth of the situation. Enlightenment. And from this he was able to give up all attachment, including fear of death. Not because of some mental discipline or emotional desire, but because lack of attachment was his True Nature, as it is for all of us. We need only realize it.
Thanks for the post, and for this opportunity to share such a private fear in such a public forum.
Thanks for your response to my response, Alex. I think you’re completely right: Mahayana is more accurate that delusion about attachment is a main cause of suffering, as there is no way to not have attachments (and why would we want to try?). So the opportunity, then, is to uncover the nature of those delusions, no? Whether about attachment or anything else.
And yet, maybe it’s all just semantics, helpful only in that different personalities will grasp things from different angles. I think that once a person realizes their true nature, as the Buddha did, they may see things in terms other than attachment, terms we can’t quite comprehend from our perspective. That is, he wasn’t necessarily “attached” to eradicating suffering. He was doing something else entirely. Maybe. Just a theory.
I promise you, enlightenment is real. As Ken Wilber says, you don’t have to take anyone’s word for it (as in most religious beliefs). You can do the experiment yourself, and arrive at your own conclusion. But I also think that it isn’t the big whammy, total-peace-and-serenity, everything’s-going-to-be-okay experience that we idealize it to be. It’s just waking up to our true nature. I realize psychiatry would probably classify the experience as a break with reality, but there is just too much evidence for me to believe that. And I don’t mean sages and books (although that is certainly evidence, too.) Just look around you! It’s everywhere, all the time. All we have to do is notice it. We are all striving and struggling toward it because it is as natural and necessary as breathing, most of us just don’t know what “it” is. At least, this is the “peek” experience, the awareness, I’ve had.
Are you familiar with Wilber’s Pre-Trans Fallacy? In it, he makes a clear distinction between what he calls pre-rational beliefs, such as the belief of a cosmic daddy in the sky, and post-rational beliefs, which include yet transcend rationality; enlightenment belongs in this camp, and he explains, eloquently and logically, why that is the case. Google it; it might be right up your alley.
Anyway, thanks again. Your blog was an exciting find for me, and I thank you so much for putting it out there!
I know the original post for this thread was made long ago, but your story really resonated with me and I wanted to share. I am 30 years old and also had appendicitis this year. I had a chronic course that lasted about 4 months with many doctors visits and tests. I am a scientist, so I share some of the anxiety that goes with being sick and having knowledge of what could be wrong. In any event, I was finally correctly diagnosed and the surgery went mostly well.
My experience brought me closer to death than I’d ever been before and made me think hard about my life. Many of the commenters here described their own experiences and, for some, it seems like the realization of mortality happened suddenly. For me, it is a journey. I can remember seeing my dead grandfather as a teenager and realizing that death happened. I have had a few close calls and have come to appreciate that my body is slowly decaying. The appendix surgery brought home the fact that I am mortal and will die. Still, I hope that death is an event in the far future. I think that, as death draws nearer, I will work to accept it and perhaps even to see it as a natural conclusion to a life well-lived.
After a couple of pneumothoraces in 1999 and a resection and biopsy, I was diagnosed with sporadic pulmonary lymphangioleiomyomatosis. At the time, my Internet research repeatedly assured me that I would be dead within 10 years.
My doctors recommended that I have my ovaries removed, take Tamoxifen, have a lung transplantation, or do nothing. Since I was pre-menopausal, I decided not to have the ovaries out, after some research about Tamoxifen I that there was no scientific evidence that it helped, but quite a bit of evidence that it harmed women with LAM, and transplantation seemed so be too big a “thing” just to keep little old me alive. So I opted to do nothing. Of course I was terribly worried about the future held for me—fighting to stay alive, slowly dying of suffocation.
However, a few months later I had another pneumothorax, had another lung surgery, and started on oxygen 24/7. I started to consider transplantation. And a few months after that, I was listed.
In 2001, I had another massive pneumothorax, another chunk of lung needed to be removed, and I subsequently needed 7 l/min of oxygen. The love of my life died of a heart attack, and I was no longer able to take care of myself. In mid 2002, I was admitted to the hospital as a high-urgency patient to wait for new lungs. I waited for 7 1/2 months.
In early 2003, my new lungs arrived. I remained on the vent for two months. During that time things were pretty rough, and I realized that I might very well be dead the next day. The realization was not painful. I reviewed my will (in my mind), and regretted that I had not written it a little differently. And in my imagination I walked the winding path in my father’s garden. I was at peace.
At some point I was taken off the vent, but was quite miserable. There wasn’t a part of me that wasn’t suffering—my body ached, I had diarrhea, my vision was impaired, the nasal-gastric tube was misery, I couldn’t talk because my vocal chords were paralyzed, my digestive system was at war, I had slight polyneuropathy. I wanted to die—in fact, I became frustrated with my doctors for not letting me go!
I’m sure I am still suffering from PTSD—there’s still a lot of anger towards doctors who let me suffer needlessly—whenever a new problem comes up, it is all “in my head” until I can prove otherwise. In the last 10 years, I have been an inpatient for a total of about two years—with endless diagnoses (including gastric bleed—I know what it feels like!) and a total of eight surgeries.
I write all this simply to demonstrate how experience can change one’s perspective on death. Of course I am “glad” that the doctors kept me alive, but being so close to death was a rewarding experience. It is liberating to have the knowledge that when the time comes, I will be able to let go.
I have no enlightenment to offer, just the questions from my 5 year old echoing through my mind along with my own, but it has been an interesting and somewhat comforting read—including the comments. I found you through the NYT and this is the third or fourth post I’ve read as I’ve wandered through your blog. Thank you for your openness and willingness to share and to listen. I can see that this will be a strong resource for me. I will be back again. And again, thank you.
Hello, Alex,
Like other readers, I found your site through the NY Times. Thanks to you and others for sharing your experiences. I feel like my experience is minor compared to others’ stories—but nonetheless, I empathize with the feelings of anxiety and wishing for one’s former “more carefree” self. I had endometriosis & fibroids throughout my teens and 20s, and had surgery in my mid-30s. About 10 days post-surgery, I woke up with vomiting and severe abdominal pain—thought it was a stomach virus, eventually went to the ER (my doctor was out of town). Adhesions had caused an intestinal obstruction…resulting in an NG tube, another surgery, and the realization that if I had waited longer to get help,the outcome could have been worse! Now, it’s years later and although I’m healthy (a positive outcome was I’ve become quite diligent about diet and exercise, and have managed to remain largely symptom-free)…I still worry when I have pains and twinges—that I’m missing something serious. Most times I ride it out, and it turns out to be nothing. Ironically, in my younger days I often had significant pain but didn’t worry so much—I didn’t know anything different, and hadn’t experienced any health “crises” up to that point. (I now work as a medical writer, so as others have noted, sometimes having some background knowledge makes you worry more!). I’ve been to a therapist and have begun practicing yoga…and most days I feel fine, but inevitably my anxiety starts to ratchet up in the days before my annual gyn appointment. My current doctor knows my history, and I think she understands, but I really wish that I didn’t get panicky in the waiting room (causing my BP to rise, which makes me even more anxious!). My therapist reminded me that life is “a work in progress,” so I guess I need to keep that in perspective. I also know that I very blessed with a loving network of family and friends, and am quite fortunate to be as healthy as I am today. Thank you for listening, and thanks to you (and everyone) for sharing their journeys.
I’m another one who found your site through the New York Times. And I’m glad I did. Lately, after the death of both parents, I’ve been very anxious about death—not so much about dying as about the state of being dead that others have so well described here. While I was raised as part of a faith community and have spent much of my adult life formally studying religion, I haven’t had much luck drawing upon my personal background or my studies to quell the fear. I’m too modern, too practical and rational, to buy into ideas that aren’t empirically testable.
But, you know, I think that in itself is part of the problem. It goes without saying that science, medicine, technology, etc., have made vast improvements in human life. But I also think there’s a sphere of being that we can’t directly know, a spiritual dimension that we’ve managed to marginalize in our modern world. I guess what I’m trying to say is this: we can’t know whether there is an afterlife, but the conditions of our contemporary experiences sure make it harder that it’s been in all of previous history to believe that it exists.
Take Johann Sebastian Bach (just as one example among hundreds). Here was a brilliant musician, a composer whose music brings one out of oneself into a realm of transcendence. His music is complex and sophisticated, the product of rare genius. This brilliant man was deeply devout. He was a faithful Christian, a believer.
So I say to myself: who’s wiser, me or J.S. Bach? Who knows more about the human condition, who can better express the needs of the mind and soul? If this exceptional man had faith, doesn’t that suggest that faith isn’t necessarily irrational, suboptimal, primitive, delusional, and all the other pejorative words we hurl at it these days?
Thinking about Bach gives me comfort—and there are so many other examples. We live in a skeptical age, and cynicism has become our plausibility structure. It’s harder for us to have, and to justify having, faith than it was for our ancestors. But that doesn’t mean it’s in error.
THANK YOU! It is so refreshing to read about this emotional issue/experience, which I, at 59, have been dealing with more and more since my father’s (87) apparently peaceful death about 2 years ago. I will look more deeply into Buddhism and meditate more…I know how to and don’t do it often enough, and I think it helps.
Humans stand alone among all life, as far as we know, in the knowledge of death. This knowledge births the fear of death in most individuals. This fear has plagued humans for as long as anyone knows. Is there a way to banish fear of death, instantly and from that moment onward?
In fact, the information regarding how to do this has been available for thousands of years: what the individual must do is bring psychological time to a stop; bring thought to an end; silence ego (the “I,” the “me”).
Once a person does this, the person comes into contact with the realm beyond time and measure, therefore timeless and deathless, infinite and eternal.
When individuals do this for the first time, however, some experience the unpleasant surprise of having feelings ranging from mild discomfort to stark terror. This is because ego does not like to be silenced!
But once one understands this, one is utterly transformed: All fear is instantly and from that moment onward brought to an end, replaced simultaneously by the understanding of the true meaning of love. This does not mean an individual, when confronted by a tiger, would not attempt to escape. That is intelligence in action, not fear. In the context of this comment, the fear being discussed is anxiety, often referred to as “existential angst.”
The understanding previously mentioned, as stated, reveals the true meaning of love because a person understands that oneness is the actuality, not division—with the latter constituting an illusion which occurs when a person does not place ego in its proper perspective, which results in fear of death.
But don’t just take my word for it. Don’t just take my word that enabling yourself, as described, to be in communion with the ultimate dimension will banish the fear of death. Do it and find out.
Hi, thanks for sharing your experiences. There are things I can really relate to. I had a similar anxiety/nausea feedback condition when I was a kid, and looking back on it as an adult, I suspect it had a lot to do with my mother’s illness and death when I was a kid.
When I was 4 years old, I saw my mother have a seizure, and it was a disturbing thing to watch: I was alone with her in the living room, and she was lying on the sofa, and her body started to shake side to side violently, and her eyes were rolling in the back of her head. I asked her what was wrong over and over, but of course she couldn’t answer. Shortly afterward my aunt came in and made me leave the room and closed the door while she called the ambulance.
After that, she spent the next few months deteriorating in the hospital until she died (I learned later it was a rare type of cancer). I hardly ever saw her as much after she went to the hospital. During that time I started kindergarten, and I had issues riding the early morning bus. I mean, getting intensely anxious is a normal thing for a 5 year-old when they have to leave home to go to school on the bus at 6:00 am, but every morning I pretty much had an anxiety attack, and I would vomit on the bus. It wasn’t motion-sickness, it was nervousness, and the bus driver made sure I always sat in front so he could slide the garbage can over my way when I started to gag.
This was every morning, and it became a feedback thing, where eventually I was no longer nervous about leaving home, I was nervous about throwing up. And just being nervous about it made the nausea worse, which increased the anxiety, and so on. I had to put up with the illness and anxiety and humiliation for years. And not only that, it became my normal reaction whenever I was going to a new place like camp or something.
As a kid I tried everything, repeating mantras in my head, praying, thinking of whatever I could to keep myself from throwing up. Sometimes I was successful, and eventually over the years it became less frequent. It didn’t stop completely until I was about 10 or 11.
Thankfully I no longer have such problems, although it’s likely that seeing my mother become ill and losing her probably had something to do with that. I’m not sure exactly how though.
I never really started contemplating about death though until I was in my late teens. After my mother died when I was 5, my dad sat with my sister and I in the hospital courtyard and told me that she was in heaven, and that I would see her again when I die. This is what I believed for a decade afterward, and so the way I saw it, she was never really “dead.” She was in heaven waiting for me and I would think about her every night.
After my parakeet died when I was 17, I started questioning what really happens when you die, and all the illusions I had sustained about death started crumbling. I remember being 17 and being consumed by death anxiety, being confronted with the possibility that my mother, my relatives, everyone I loved who had died and who will die will actually disappear forever, and I will no longer see them again. Although I never officially saw a psychiatrist or anything, I’m pretty sure I was clinically depressed. That turns into a whole other story though, which is thankfully over.
About 7 years later now (I’m 24), I acknowledge that when we die we really might just disappear forever, and that after death, that is it. However, I still have a need for belief in some type of permanence, in being reunited with the loved ones you have lost—because the alternative would be just too psychologically despairing for me.
For now though, I no longer believe in “heaven,” but hold out hope for some spiritual idea that when we die our life force, including our consciousness, separates from our bodies and reunites with nature, or some “universal life force” which is comprised of the past energies of our loved ones as well. It gets me through the day, at least.
How come you pathologize something so very normal—the fear of death—and call it PTSD? If anything, this is an existential crisis.
I’m 60, still highly engaged in life. Yet I get those moments that have made me sit up in bed with a start: there may not be 20 more years! I’m going to die! And I see the chasm: those of us facing it and those still youthful enough to think it’s too far ahead to worry about. I know what they cannot—their time to fear dying will happen.
But face it we must and by facing it, we learn lessons. We cannot turn away with delusions of fairy tales like heaven or spirits joining some enormous infinite universal party. When have we ever found in life the best lessons come easy? It is time we who have been educated and have intelligence face the facts: learning to die well is an honor and a final journey we should not cloud with fairy tales because we are afraid.
If not now, then never. I shall work at dying as I embrace living. I want to feel the fear and what it can teach me. I reject PTSD as inane. And Buddhism is so not where it’s at and you fool yourself thinking spiritual is better than religious. It isn’t. Both are escapism. Death is coming and there is no escape. As always, living well is the best revenge and also the best way to enter our last moments if possible. PTSD is more escapism. Don’t make death any more of a profit center than it already is by giving it the PTSD label and turning it over to the psychiatrists and psychologists.
I have found it very interesting reading this conversational thread that has been taking place bit by bit for over half a year now. The original posting by Alex seems to me to be specifically concerned with describing and ameliorating the PTSD that can result from unexpected contact either with near death oneself or as a witness to death.
Alex’s formulation was very helpful to me because previously I had been maintaining a mental distinction or in Alex’s language a “delusion about an attachment” that his post dissolved for me. My delusion had been that in my life there was a causal chain: traumatic events lead to PTSD, which exacerbates physical problems creating illness, thereby causing near-death experiences. What I realized from this article is that for me it became a feedback loop, where any experience of great physical pain tends to re-trigger the PTSD that was attached to previous physical trauma. In other words, it is not the original situational traumas outside of my body that still have a hold on me, but rather the reverse linkage to my bodily pain that serves as a trigger.
Having gone through extensive therapy for the initial triggers, I found some relief, but was nonetheless occasionally re-traumatized, with little insight as to how to improve things. The insight being the commonality of the proximity of death to both situational trauma (in my case being criminally assaulted) and physical trauma. Thank you so much for this insight, Alex.
Part of my reason to write was in response to Ann who wrote on Oct 16. I understand the frustration of living in a world where people’s normal behavior’s and attitudes are being pathologized left and right. However, PTSD, when you are inside of it, is a pathological state. One minute you are going about your business and you are fine, and then the next, for example, somebody accidentally bumps you with a sharp object (in my case) and then the room is spinning, the lights go dim, my temperature rises, etc….This happens instantaneously upon being triggered. This is very different than leisurely contemplating death at one’s discretion. Initially consciousness of death is not at the forefront of your mind. It’s more like there’s a physical response; in Alex it was nausea, and then as you start to recover from it, you then have some capacity to analyze the associated emotions and thoughts. Upon reflection, someone with PTSD starts thinking “the reason this is/was so stressful is this could have killed me, or this might in the imminent future kill me.”
For me, I think the panic is caused by “this could have killed me and I’m not ready to go” that sets it off. When one is soberly contemplating the possibility of dying “there might not be 20 yrs!” as Ann said, then one can imagine the idea of death, but the possibility doesn’t seem real, imminent, and unwelcome. It’s one thing to imagine peacefully dying sometime in the future, and quite another to feel like “that idiot nearly ran me over with his minivan going 20 mph above the speed limit.” The instantaneous physical fight-or-flight adrenal hyper-reaction that is triggered in situations wherein one lacks control provokes the stress response, even though one has intellectually knowledge that ultimately death will come. In some people with prior trauma, the response can be on occasion disproportionate to the actual level of threat that a non-traumatized person would perceive.
For example, I would bet that in the days following 9/11 when air traffic resumed, you and most people in the US were were a little more conscious and nervous at the sound of a jet engine overhead.
I hope that helps clarify things for Ann or others who might have thought some of the same things that she did.
I like your writing style and find your topic intriguing. I am not afraid of dying and came to that state of peace through some trauma. Here is my shattered delusion.
Julia K writes that your original posting seems “to be specifically concerned with describing and ameliorating the PTSD that can result from unexpected contact either with near death oneself or as a witness to death.” I also suffered a bout of PTSD brought on by the unlikely event of the birth of a child.
The rest of the story is that I was in an emotionally and verbally abusive marriage and while I was at work (in a hospital), my 14-year-old step-daughter whom we did not know was pregnant (really) came in through the emergency room and I was paged to Labor & Delivery stat to help deliver her baby.
My own toddlers gave me recent experience that helped me in my role as labor coach, but it was such a shock to my system that I had panic attacks driving back to the hospital to work a few days later. I took my step-daughter to counseling immediately where they suggested that I should return as well. I eventually did as there was far more to deal with than the new life.
Alex’s formulation was very helpful to me as it was to Julia K. because I also had been maintaining a “delusion about an attachment.” I thought that if I just worked hard enough, prayed often enough, and ignored reality that I could make things right even in a wrong situation. Giving up that delusion meant facing an abusive marriage with escalating confrontations. The spoken and unspoken threats created such a deep fear in me that I couldn’t even identify it.
The only way I could face the risks involved in getting my children and I to safety was to deal with the fear of death—by the man who had vowed to love me who also, by the way, was a veteran suffering from untreated PTSD.
With help over a period of about 5 years, I came to the realization that being so fearful of everything I did was no way to live so I was actually more afraid of living than dying. I was then able to focus my strength and love on my children and make their life safer, happier, and better.
It is now 10 years later, my story has a happy ending and I am very aware of how lucky I am. I had a good education, a good job, and was surrounded by wonderful friends and family just waiting to let them help me where they could. Not everyone has that.
It has certainly not been easy but compared to life that wasn’t really living, or worth living, I am very grateful for the counseling profession. I know there are a lot of critics of counseling but I feel that counselors are to the depressed and oppressed as insulin is to the diabetic, except with counselors their success is defined by your eventual lack of need for them.
Alex and Commenters: During the recent end-of-life stages of illness of seven close family members, I saw that each person’s struggle was very internalized, always causing these persons to have their eyes continuously closed. I now know that each one was experiencing their own, intensely-waged battle inside their heads and bodies; it was theirs, not ours. They used up what was left of their lives during their battle. I now know what happens at the end of life, to the last breath, and how the body shuts down. Nothing very dramatic. All of them cried at about three days before death about leaving, though my mother said “You’re all leaving me!” All of them uttered a comment or premonition about one or two days before death. These were people from age 21 to 94, and the comments always were about a loved one being imagined (usually ‘mother’). No matter the age, this process was identical, a dissipation without fear at the end, a sense that “this is the way it is.” It’s less of an unknown for me now. Not a nightmare. But sad and sweet for “us.” I suspect I will not be fearful.
I have just finished reading the comments and find at least some comfort in the fact that other people feel the same panic and dread at the fact of dying. I think I have always had anxieties about death and suffering from cancer particularly. When I was 5 I lost my grandmother and grandfather and then my father was diagnosed with bowel cancer so I thought I was going to lose him as well. I started clinging to my mother and developed a life long habit of worrying and dependency on her. I am now alone at 62 having not been able to form any other close relationships because men found me too “needy.”
Hi,
Great article. I try to be as unfussy about death with my kids as possible; we also go to our Lutheran church regularly, and there we keep getting reminded that, as Jesus put it, we can die any minute and worrying about it will not prolong our lifespan by an inch—so live and love here and now. So much for the intellectual approach.
I really got hit in the guts by fear of dying in the last few months when my son turned out to have a severe speech delay, which may or may not respond to treatment. We will know in 5 years or so. The thing was—if he cannot ever live independently, what happens if i die tomorrow？ That was the first time I REALLY cared. And then we found competent clinicians, are now in the diagnostic process, and are cautiously optimistic. There is a also a competent special needs school in sight.
Then I stumbled across a quote by the great Janusz Korczak (for those of you who haven’t heard of him: Warsaw doctor who chose to be gassed with his orphan charges under Nazi occupation, although he could have left): “Every child has a right to their own death.” And this opened up another point I had blissfully ignored until then: we are not only sure to die ourselves, but so are our children! They only represent our potential immortality (biologically speaking), but the line may stop with them any time. AND THAT IS THEIR AFFAIR, NOT THE PARENTS’. Talk about a hard lesson that makes me cry as I write this. However, I do try to absorb it—if not, I will just turn into one of these overprotective horror mums. And ruin whatever fun we can have despite this helplessness. So, everyone—SEIZE THE DAY! (Horace actually says: pick the day (like a flower), and trust in the coming of the next one as little as possible) (carpe diem quam minimo credula postero).
Take care. Cry as much as you need, and no more.
Thank you, Mr. Alex Lickerman. We know we have to die, but I do not wish to know how & when. Religions put it: you remind yourself that today, tomorrow, the day after, it’s going to happen. Just go about your life, do the best you can. Reminding yourself of death is a great deterrent from wanting to be the richest or the most powerful man or woman or earth.
Thanks for your time.
Rgds
My brother died twelve years ago. He had a very strong personality.
When he died, many things happened in which he showed his presence. He directed me to say and do various things on his behalf. He appeared to several friends and left the message that he was fine, and happier without the need for his body, which had been a burden to him. He played a joke on his daughter in order to cheer her up.
His gift to me is knowing that we go on. I don’t know how, but we do go on.
The sadness is leaving the people we love and knowing that their lives will never be the same after the loss of a loved one.
SO MANY PEOPLE (ESPECIALLY CHILDREN) HAVE HAD SIMILAR EXPERIENCES OF HAVING CONTACT WITH A LOVED ONE WHO HAS DIED. I AM SURPRISED THAT NO ONE HAS WRITTEN ABOUT THIS. BEST WISHES TO ALL
EDIE
I’m a breast cancer survivor who suffers from undiagnosed PTSD due to brutal treatments (bilateral mastectomy) and insensitive medical “caregivers.” Prior to diagnosis I was phobic of blood, needles and had never stepped foot in a hospital. No need as I was a light-weight, vegetarian marathoner. After being blindsided by cancer I developed extreme anxiety especially after a traumatic lumpectomy surgery failed to produce clean margins. My Stage 1 BC may not be a death sentence but it was a sentence to an unending series of unpleasant treatments. And it stole 2 years of my life as I underwent several reconstruction surgeries fraught with complications from a seroma. Finally cancer free with new breast “mounds” I failed to find much anticipated peace. Fears of reccurence and mets haunt me day and night. Friends with cancer are dying. A routine eye exam revealed a new mole behind my retina. Eye doctor feared I might have malignant melanoma, so I went to NCI center for scary check-up! The cancer diagnosis on my chart now makes every lump, bump, bone ache a potential new cancer diagnosis. And breast cancer mets, though treatable is not curable. We are talking GAME OVER if cancer rears its hydra head again. I’ve been forced to accept my mortality, vulnerability and anxiety at a young age. And mortality is no longer a philosophical concept but a daily reality. But because of my PTSD I can’t embrace the moment. No! I have panic attacks. Nightmares! Extreme anxiety. Now I avoid beloved activities such as cycling because I can’t face an accident. Another ER or bleached XLLL smock. My former good health has been replaced with stress related high BP, cholesterol, cortisol hypothyroidism …in 2 years! Thus, I’m glad to find this website. I’m hoping that by “studying death” I’ll fear it less because living in fear is no way to live!
Hi, I’m the cancer curmudgeon with PTSD and medical phobias.
I have an excellent therapist who helped me through my 6 surgeries with hypnotherapy. However, progress is slow because we only have 1 hour per week. I’m searching for a program that specifically treats (non-warfare) PTSD. Or a cancer clinical trial that addresses PTSD. I believe that cancer patients and soldiers have a lot in common. We don’t know when or where the next “bullet” will strike but we feel endangered. We’re watching our backs and the rest of our vulnerable bodies. And we’re dealing with a unpredictable, slippery foe!
As a survivor of a near-death experience, I will add it is a sad moment when one’s human innocence and faith of a sort are smashed by the reality that physical death is real. When I was diagnosed with cancer 9 years ago I felt shell-shocked, literally, as cancer was something that happened to other people.
The beauty of this experience, however, lies in what it does to the quality of life once accepted. I likened it to peeling the dirty solar paper off a window. Suddenly everything in life is so very clear. What is right, wrong, important, insignificant, whom we love, whom we have no time for, etc.
The obsession with self by all of us—as humans are above all filled with enlightened self-interest—is the one element of which we cannot rid ourselves. It is this quality that makes death such a villainous monster. I just turned 60, which I now find a miracle looking back at my childhood, the risks I took in my life, etc., and I am surprised every time I wake up with what a blessing health and wellness are.
This post reminds me of my experience when I was 17. I had a bad bout of a PTSD-like thing after attending the first funeral in my entire life. I started wondering how it “felt” like to be dead, to be lying six feet under the ground, a million feet trampling over my grave, stuck in nothingness for eternity. And eternity is such a hell of a time. The thought made me dizzy and gave me very bad panic attacks. I couldn’t believe that I could cease to exist…to just be nothing. The ego in me violently opposed this. How could I not exist? It was almost…cognitive dissonance…and I started worrying about losing my loved ones, my relatives…etc.
Nowadays I too find solace in Buddhism because it gives me so much wisdom to cope with my fear. Reading Mitch Albom’s Tuesdays with Morrie helped a lot too. But I wouldn’t have traded this harrowing experience for anything. It gave me awareness on top of everything. Although now I’m still battling this mild fear.
Hi Alex,
Sorry to comment on a post nearly a year old but it seems to continue generating interest! Perhaps it has already been suggested but a few things that have eased my mind about reincarnation and thus fear of dying are past life regression hypnosis (with a licensed therapist), a reading of the Akashic records from the School of Metaphysics, and a book called Journey of Souls by Michael Newton, PhD.
While none of these things will be compelling to a skeptic, each is a good start for someone with a desire to accept reincarnation as a possibility. Best wishes!
Dear Alex,
I have just finished reading all the wonderful posts listed above. I have another thought about PTSD to add.
I have just returned from a visit home over the holidays. When I got home, I was consumed with anxiety for several days regarding some comments my father made. He has always been critical and negative about me and my brothers.
I was finally released from this psychic pain when I realized that I had to distance myself from him and communicate that fact to the entire family. The relief that flooded over me after I came to this realization was immense, and it has lasted. I cannot even summon up the anxiety I felt before.
Now I think I may have suffered a kind of PTSD. Putting this name on it makes me feel more “sane” and normal.
Thank you for putting this discussion out on the web, and maintaining communication with your readers.
Here I go again. Phone rings and it’s a nurse with a lab report. Her voice on machine. Stomach churns. Feel sick. Heart skips a beat. This time it’s not radiologist calling with bad cancer path but an endocrinologist I consulted for sub-clinical hypothyroidism. My OTC “Thyroid Energy” pills have apparently worked and my TSH levels have dropped. Great news! BUT PTSD has already wrecked havoc with internal organs. Body is awash in cortisol. I go to bed trembling with upset stomach. Rest of the day ruined. Cancel plans for dinner…I’m left wondering: is there a treatment center for PTSD that is not war related? Anyone out there that treats medically related PTSD/hyperchondria and phobias? I have (not to brag) great insurance and many FF airline points tho’ I’m just middle class. Still I’d sell my house to get relief. I don’t want to live in constant fear that my body is in danger or that my cancer will return. It’s to the point where I might have a heart attack with a blood stick or nurse/MD phone call. Can any one out there recommend integrative treatment centers (Mayo?) or is that permitted on this blog? At the very least I’d like an “executive physical.” The 10 min check-up at FP did more to induce than reduce anxiety. Thanks!
This is a message from Julia K. to the Julia who wrote on January 20:
My experiences and symptoms are close enough to yours that I’ll venture to post some advice.
In the last two years I’ve had the same sort of hormonal stress issues that you mention, but to a slightly lesser extent. It culminated in the formation of gallstones and attack of gallbladder inflammation. Once I had the gallbladder removed with laparoscopic surgery, it alleviated both chronic fibromyalgia pain and PTSD has diminished 90%.
I have no idea whether gallbladder might be at issue for you, but certainly get the proper ultrasound if you have pain in the upper right abdomen or right flank.
So, what I would say is something like this: on the one hand you should find some palliative things to help calm your self. For me it is getting shiatsu treatment and my basic model jetted bathtub. Also, personally, I have a prescription from my general practitioner for xanax that I take one pill maybe every other month or so, and I haven’t found it to be addictive or problematic in any way. On the other hand, you need to push through and get the diagnostics and treatments that are going to help you.
Personally, the most effective psychotherapeutic type of help that I have gotten has been through a social worker: someone trained to help you get the resources you need to solve your problems.
Hope some of that might be relevant.
—Julia K.
It is believed that all of creation sprung forth from a nothingness (whatever that is) in the matter of 10 to the -43 seconds. Gravitational energy rebounded on itself from the rapidly expanding space-time. Some of that energy condensed into slightly denser-than-nothing wave-particles, that for whatever reason, have the ability to interact with each other. Several simple laws and billions of years later, those clouds of particles became stars, then planets, then complex chemicals, then life. That life came and went, evolved, lived and died. Until at last, 14-15 billion years after the cosmic belch, here you and I are wondering what happens when we die. My question is, when did we not exist? The potential for you, and I, and all things was present in that first instant of instants. Perhaps, even before that, whatever before this time was.
As I see it, all things, but especially self-aware, biological phenomena like we humans, are still that one energy spreading itself out into all possible manifestations. The self seems to be the greatest delusion, one very hard to break free of. So what if death as a human being on planet earth is the true end of the human self. My fears of death have been greatly reduced by NOT REALLY knowing how everything came to be. IF it did come from an eternal nothingness, then I am convinced that such an occurrence will happen again, and again, and again on into infinitum.
For myself, this means I have been before, whatever I was, and after the pattern of wave-particles of energy that currently form “Myself” dump back into the cosmic pool, another “I” will emerge from nothingness whenever the conditions are right. As the cosmos appeared from nowhere, so did you and I. Perhaps death is just going back to the beginning. Not this life’s beginning…perhaps not even within this universe or other versions of it.
In conclusion, all I really know, is I am now. But the very fact that I am at all, means I came from nothing at least once. If it happened once, then it only makes sense to me that it has happened before long ago in the dreamy depths of eternity and will come to pass again in the equally dreamy depths of the long off future…or long ago future, time seems to have no direction when dealing with eternity. I do not know how or why I awoke upon this Earth, but I am pretty sure it wasn’t the first time “I” have been stirred from dreamless slumber, and I am pretty certain it won’t be the last time. Hell that first 14 billion years went by in an instant. I hope you find peace friend. Enjoy being part of the imagination and complexity machine the universe seems to be.
Maybe that is what Nirvana is, knowing deep within that you ARE the eternal when being faced with the deception that you are not. Not that one cannot die, but that death as an individual is just that, the end of one individual experience, not the end of experience itself.
Alex,
As I read your blog my mouth dropped open. I have been experiencing the exact same feelings and thoughts as you. I was diagnosed with prostate cancer 2 years ago at the age of 42. Fortunately, I had very low risk disease. I was told by my doctor at Johns Hopkins that 99.6% of all the people who have the kind of prostate cancer I had never have to deal with it again. This was from a study of 2,500 patients treated they treated with a follow-up as far out as 22 years. My first reaction was, “O.K. what happened to the .4% that did have it come back?” Luckily, he said, “Nothing, they are still alive, with no progression.” Any sane person would have taken the 99.6% and gone on with their life. The whole experience has shattered my life. Every time I get a pain or some odd feeling somewhere in my body, I run to the doctor to make sure it is not a new cancer. If you Google any symptom you get on the Internet you will find that “everything” comes back with tumor as a possible cause. Everyday of life is a struggle now. I will never feel secure about anything again.
I wonder if these terrible anxieties could be thought about in total, in the same way some people live their entire lives suffering from long-ago trauma? That is, that your new life with PTSD is robbing you blind.
The final PBS episode of THIS EMOTIONAL LIFE honestly deals with HAPPINESS. It asks you to think about what things make you feel happy and suggests that making those things your priority in life may lead you in a different direction. And to avoid the things that you know make you unhappy. This is a different issue than the one in which your body has hurt you terribly. So, what continues to make you happy?
Hi, Chris. I’ve also been treated at Hopkins for Stage One BC and given a 92%, 10-year survival rate. You’d think I’d feel upbeat but I don’t because of my anxiety. A new mole behind my retina—discovered during routine eye exam—left me in tears on the phone with my oncologist. He immediately got me appointment in JH eye clinic. After a four-hour exam, all was well. Something else to monitor though. I take comfort from being treated at an excellent NCI center, and I hope you do as well. Hopkins not only saved my life but its patient care made hospitals in ATL seem like Civil War Field units in comparison ;-)! We are both darn lucky to be getting “state-of-art” care. Survival rates are dependent on choice of treatment centers and we made good choices ;-))!
Julia,
I choose JH for the exact reasons you speak. They had the best outcome for patients like me. Nobody else could even tell me what their results of their programs were. I really feel for you. What most people don’t understand is that the doctors can’t tell you which side of the percentages you are on. It is a fact that better centers will have better outcomes. As for your eye, my boss’s wife had the same thing. It turned out to be nothing as well. I fully relate to the terror you feel. Since my prostate cancer I’ve had a colonoscopy, moles taken off, a sinus scan and my eyes examined. Cancer really never crossed my mind before when I had a symptom. Now, when something changes I first make sure that possibility is ruled out.
Alex,
I would love to find a therapist who might be able to help. I have been to several, but don’t really feel any of them are capable of helping me. I live in Columbus, OH. You wouldn’t happen to know of any close would you?
Thanks for doing this. I finally feel I have found a place where people seem to have the same issue to deal with.
Thank you for this article. While it certainly didn’t offer me any of the answers I may be hopelessly looking for, there is some comfort in knowing you aren’t alone in the way you feel.
I am crippled with fear over my impending eternal nothingness for obvious enough reasons, but looking at the bigger picture, the very realistic concept that death is in fact the ultimate end bothers me from another standpoint; what is the point to any of this?
If indeed our consciousness ends completely when we die, and there is just absolute nothingness/oblivion for eternity, it is safe to say that in death, what happened in our lives was completely meaningless.
Yes, what happens to us now is obviously relevant and meaningful as we are living; but the moment you die, it matters not whether you had an amazingly happy and fulfilling life and touched and loved thousands, or if you were miserable and lonely. You meet the exact same end; complete nothingness. You can’t bring with you the love you shared, the things you learned, nothing.
Some people like to say they will live on in the memories of those left behind. Right, until those people die, and those memories fade into oblivion along with them.
Some people take comfort in that cycle. To me, it seems utterly pointless. No matter how many generations you are remembered/loved, it will just keep getting erased into nothingness for all eternity.
Anyway, sorry for the depressing rant. I take a tiny bit of comfort in it, I guess. If you are trying to prove logically the unprovable… Nothingness after death doesn’t make any sense, because it renders everything; all life now, before us, and after us; completely meaningless.
And if indeed that’s true, that this is all completely meaningless, and our being born was a waste of time since being brought out of nothingness only to sink back into nothingness might as well have just been one continuous string of nothingness… I guess we’re “lucky” to get this little bit of somethingness, eh?
This is really excellent writing. I work in the medical field and have for a while, but it’s only recently that the reality of what I see every day sank in actually from a vicarious professional experience (a friend told me about it).
Basically what happened is that they had a pregnant female patient with longstanding pericarditis (inflammation of the sac that surrounds the heart, for anyone who doesn’t know), and she started having chest pain again. Crippling chest pain. While 9 months pregnant.
So they admit her and send her home and the pain comes back and they admit her and send her home again over and over (a total of something like 9 times) in the meantime really screwing the pooch by failing to call for an electrocardiogram and performing chest pain evaluations incorrectly.
So finally the repeated problems are apparently causing changes in the fetal signs of life, so they induce labor, and the kid is fine, and 18 hours later the woman is dead.
And they found liters of blood in her body. Aortic dissection.
And so they convene the next morning and say “Where’s her ECG?” and they realize “There isn’t one.” So they said “Well, she’s had an ECG in the past. Let’s look at that.” And they did, and they realized her aorta was 4 cm wide in the last ECG she had. That no one noticed or looked at for the last month while the woman was being admitted and released.
Huge malpractice suit, whole hospital changed it’s policy so now a senior staff member in the department would look at cases of patients being readmitted for the same complaint on a required basis. Etc. etc. etc. Millions of dollars.
But very upsetting at how one detail gets lost in the shuffle of 10-15-30 people and you can get 86′d like nothin.
So this inexcusable stuff is still going on…it was never supposed to be like this, Jordan. All because of the lack of accountable systems not being put in place to prevent physician negligence, to hold ALL abnormal findings directed to urgent dissemination, without fail. Systems, that’s all it takes. Nationwide.
I’m the breast cancer “survivor” who loathes the term. Shouldn’t “survivor” be reserved for the Holocaust or soldiers at war? I’ve never “battled” the cancer diagnosis but sought to find ways to co-exist with my mutant cells. Once NED (no evidence of disease), I decided to give myself a “doctor office holiday.” Try to recover from mental trauma that was worse than physical trauma of six surgeries. Now regaining balance thru Tai Chi/QiGong and acupuncture, along with breath work and relaxing music. I’m overdue for oncology check-up but can’t make myself go. If cancer returns it’s treatable, but not curable. Given my anxiety/PTSD I can imagine holding up well under treatment. So whenever I schedule a doctor visit, I call back and cancel. Not going to the doctor makes me feel good. Is it delusional to want to believe in a future, until I don’t have a future? I’m thinking it’s best to be diagnosed end-stage rather than suffer mental angst of reoccurrence & 2 years of miserable chemo/rads that I don’t want prior to death. I want to cling to NED status. Finally, thanks for this website. It’s comforting & useful to me. Love the poetry & book recommendations not found elsewhere.
Again a comment from one Julia to another…
I’m wondering how much physical pain are you in now? It’s basically impossible not to feel anxious when you are in pain 24/7.
At the conclusion of a recent hospitalization for a migraine so severe it mimicked a stroke, the doctors suggested antidepressants, not because of depression per se, but as a way to amp down the pain signals that would enable me to function better, and downgrade stress reactions such as those leading to migraine. I started with Wellbutrin, prescribed by my primary care doc on account of its minimal side effect profile and because Wellbutrin can be a good migraine preventative. I imagine most primary physicians would probably feel comfortable with it for you. However, it can increase agitation in some people, so you will need to do your research before you even see your primary and weigh your options carefully. I think if you go to a primary care appointment with a good grasp on the options (maintain an internal locus of control), it will be a less stressful event. Then, once you are feeling better, you will have the strength to deal with decisions pertaining to cancer, if necessary.
–Julia K.
Thanks, Julia. I’m not currently in physical pain. But if I had to check the pain chart that hospitals use I’d circle the frowny face (a nine?) for *emotional pain* most days. I think hospitals should use two diagrams! It’s worse now that treatment (surgery) is over. During the chaotic time of diagnosis & treatment I was mainly angry. Did the walks, talks, meditation and advocacy. But now a year out of treatment, the anger is turning to depression. And energy spent on “getting through” is gone. Feeling defeated by cancer. I’m no longer in treatment but I’m not the person I was before. It’s as though I’ve emerged from black hole after three years. The term “new normal” is offensive. The “new normal” is that of an employed former cancer patient. Not an uplifting identity. Nothing feels “normal.” I’m living with a chronic condition that may return and kill. Also, monthly loss of my acquaintances from Cancer Wellness programs create some survivor’s guilt and remind me of my fragility. I try to read comforting books on death and dying (currently No death, No Fear) but the fear returns when book is closed. I don’t live every moment to the fullest. No, cancer makes me over-focus on health and avoid life experiences & potential dangers (e.g., give up riding my beloved bike.)
Again from Julia K. to Julia,
(I hope this might be of interest to others as well as it gets back into Buddhist perspective.)
To get back to Buddhist aspect of this thread, I recently read The Art of Happiness by HH the 14th Dalai Lama. It is a very pragmatic book about how to be happy, and not shrouded in any particular dogma or belief. I think it would be of much more benefit to you then trying to adopt the beliefs in the book you mention (No Death, No Fear) as those don’t seem to be connecting to your core beliefs.
Based on what you are saying, my interpretation of the advice most relevant to you from The Art of Happiness, would be to focus on forgiveness. Forgive your body for screwing up and giving you cancer. Forgive yourself for being mortal. Forgive yourself for being afraid of the possibility of more bad events, while understanding that life is at its core a process of suffering. Forgive your friends for dying when you think it is too early for them to die. Forgive yourself for not being able to save them.
I know it is much easier said than done, but if you read the book you will see that HH really breaks down the steps of achieving happiness into practically a “happiness for dummies” guide.
I get the impression that your Cancer Wellness group puts you in a comparative mindset, thinking about what you have as opposed to what they have. Instead, focus on what you can do to help others. Maybe it is time to let the group go because there is nothing more you can do right now to help these people, and it is only making you feel stuck in powerlessness. Perhaps instead you could help someone learn to read or sew or whatever it is that you enjoy.
Or go the other direction, push into your experience. After my friend helped her mother through cancer, it motivated her to become a doctor. She’s a pediatric endocrinologist, and I do feel if she were some other type of doctor, like an oncologist, that it would be too tough for her emotionally.
Very Best Wishes,
Julia K.
[...] There are many things of which I have no fear whatsoever: I’m not afraid to fail. I’m not afraid to succeed. I’m not afraid to look foolish (though I don’t like it any more than anyone else). I’m essentially mostly afraid of being in situations where I perceive I might be in some way unsafe (that fact, coupled with the general tendency we all have to fear the unknown, probably best explains my fear of death, which I wrote about in an earlier post, Overcoming The Fear Of Death). [...]