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Fear Of Death

It’s difficult to live so sick for so long with a disease that has so little known about it. I think it is inevitable that anyone sick enough with ME/CFS thinks about the possibility of death. For some I think it is something that becomes a serious fear.

I know I personally have felt like I was going to die - for months and years. But I don’t fear death anymore. I have prepared for it, come to terms with it and have perspective that gives me peace.

I recommend writing a WILL if or when you are able to, even if it’s not a formal notarized WILL. If you can tell someone you trust to carry out your wishes it will still help. This is not because you are planning to die but because you are preparing for it mentally. Knowing what would happen if you died provides great relief from some of the unknowns.

I have written instructions for how I want to be buried (for me - cremated and my ashes spread at the base of a beautiful old tree in the Sierra-Nevada Mountains). I have written that I want my body dealt with according to Buddhist tradition, with specific prayers. I have written who I want my belongings to go to. This makes me feel happy thinking of people I love getting things of mine that would mean something to them. I have written instructions for a wake of some sort (if there is one) with music I love and a few things I would like read. Most importantly I have a list of people who are to be told that I love them. This also brings me happiness and peace imaging them told this - that I remembered them, love them and thought to have them told so when I died, sometimes even after many years without contact.

It is also important to mentally come to terms with the possibility of death. This is more complicated and what it requires will vary from person to person. I can’t say anything specific for how to do this. But I personally feel that the universe is much more vast than this life and this body. I also know that we all die at some point. It is a part of life. This is something you need to navigate on your own but it is important to do the work of finding this acceptance. We all die at some point. It is a fruitless waste of energy to fear that which is inevitable.

I think what makes a lot of people fear death the most is having things in their life that are unfinished or left in disarray. This is especially pertinent to ME/CFS patients because most of our lives got abruptly stopped and are on hold with every aspect of life left unfinished. But there are still things you can do to tie up loose ends. It is important to make things right with people in your life to the extent that you feel you would like them to be if you were to die. And finish projects you have left uncompleted if you can or leave instructions for how to deal with the incomplete things in your life or what to do do with them. I have detailed instructions for what to do with unfinished creative projects of mine in my WILL.

The most important thing to overcome fear of death is having perspective on this life and what it means. This isn’t something I can tell you how to do either because we all come from different religious backgrounds and have different spiritual beliefs. But I can recommend to think long and hard about what death means to you and what it will be like. Preparing for it and having an idea of what to expect clears a lot of fear away. Fear thrives on unknowns. No one knows for sure what happens when we die, but you can still generate perspective about what you believe it will be like and how insignificant death is to make it feel less scary.

Western culture tells us we live forever and makes thinking about death out to be a morose activity. But in many cultures, death is thought about, celebrated and explored through education, ceremonies and festivities. It is actually very healthy to think about death, acknowledge it and have some kind of belief system that tells you what it will be like.

I follow the Buddhist path and believe in reincarnation. I believe my suffering in this life is a great purification of negative karma from the past (negative karma from past lives ripening now, so it won’t plague me in the future or in future lives) and part of my very long journey towards enlightenment. I have a feeling that this is where I am supposed to be right now. And I feel that death is a transition, not an end. I also have many ideas of what death will be like from Buddhist teachings. All of this helps bring me peace.

I do not want to die by any means I want to make that clear. I have so much more I want to do and could do in this life. But I’m happy with the life I have lived so far. I feel I have accomplished important things to me and have truly loved many amazing people. I am at peace with the possibility of death.

But I don’t want death, I will never give up fighting for life no matter the suffering I endure. I will never give up.

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