Disintegrating Death—An Insight into My Experience with Terminal Illness

It's different

Photo by National Cancer Institute on Unsplash

Did you know that there are different kinds of death? Neither did I. Not until long after my wife died and I reached out to help a friend whose husband died suddenly. It didn’t take long to realize that our experiences were very different.

My friend’s husband walked out the door to go to work one day and never came back. He died at his desk in his office. The death was sudden and unexpected. Her grief came on instantly. Her life changed totally in that moment. One day she was married, happy, and planning for retirement with him. The next, she was alone, overwhelmed, and grieving. Although I could empathize with her loss, I quickly understood that our experiences were radically different.

If her experience was sudden death, mine could be called disintegrating death. Disintegrating death is the path of terminal illness. In this, the lover and caregiver experiences the long slow decline of the person they love. Cancer, mental illness, dementia, or other illnesses just slowly take them away from you and put more and more burden upon you. This was my experience. Lynn just faded away into an unrecognizable form, the combination of breast cancer and mental illness turning her away from me, and eventually—even worse—against me. As I have learned, this is typical of disintegrating death and disintegrating loss.

Lynn and I had a real and deep love for many years, but when she got cancer, she began a process of becoming someone other herself, and the torment in my heart became enormous. There I was, day after day, watching the love of my life disappear.

Men friends of mine have had a similar experience. Our loved ones disappear into themselves, become something else, and the sad grief swells and balloons inside you, but you are carrying the weight of everything on your shoulders—care for her, organizing care, loving her, logistics, family dynamics—and if you drop a ball, everything falls apart. You can’t drop a ball. You can’t grieve what is going on, even though, day by day, your person is disappearing before your eyes, and no one understands what is happening, not even you. When you add mental illness or brain metastases on top of it, the whole effect magnifies. Often, you become her enemy. She sees you, seethes at you, blames you, pollutes your world with negativity. All of it as you are trying your best to stay in love with her. The truth is that if she didn’t hold a terminal illness, you would walk away from that behavior. And you should because it has become abusive. But no one sees this. All they see is the woman who you loved dying and they find pity and sympathy for her, but they never see your suffering. You become the loneliest man in the world.

I hated this. I hated it, but it describes my experience and that of my friends who also lost their loves to metastatic breast cancer. Disintegrating death refers to the dying person, but disintegrating loss refers to us. It is as if you hold them in your arms and they just melt away until there is nothing to hold anymore. Lynn disappeared like that. As if disappearing slowly behind the dark veil of the spirit world.

I want to give voice to my experience because I am slowly discovering how common it is—common, yet unspoken and unrecognized. Behind the tragedy of every woman who dies of breast cancer, there is a man suffering this loss. I was one of them and I never felt more alone. People around us did what they could to help and that was deeply appreciated. But my partner, my love, was gone. She was slipping behind that black veil. Slipping into the silence of her soul. Her desperation made it so that I could hardly even see what was happening, and all attempts at honest awareness were met with staunch denial. Without ever even knowing it, our last words of-= honest truth and deep love had been uttered long ago. Eventually, she faded into the night, dying at 56 years old, six years ago yesterday.

I want to honor Lynn and her suffering on this day. I also want to honor my brothers who have suffered this. And I want to honor my daughters who suffered through it. I offer a salute to you who are going through it or have gone through it. There are many sufferings in all kinds of loss. All of them deserve honor. Disintegrating death and disintegrating loss are their own unique paths.

Anthony Signorelli

Lancelot’s Tears is a journal of personal reflections and guidance for men who are losing or have lost their wives. Please feel free to join us.