Let's Talk About Death, Baby

When my husband Patrick was diagnosed with glioblastoma brain cancer in 2014, I had never watched someone die. I did not know what it looked like, what it sounded like, or how the process would unfold.

After his diagnosis, I was so focused on trying to save his life and “staying positive” that I failed to educate myself or prepare for the inevitable.

Instead of having important conversations with Patrick about how he felt as his recognizable self slowly disappeared, we focused on treatment protocols. Rather than asking how he felt about me moving forward after he was gone, or someday trying to find love again, our days centered on managing the crisis of the moment and controlling seizures.

Simply put, I could not handle the reality that Patrick was going to die. This was not some amorphous future possibility. It was going to happen quickly following his diagnosis with the most aggressive form of brain cancer.

I missed the opportunity to create space for Patrick to share what the experience was like for him. Although his tumor often interfered with his ability to communicate, I know now that he had plenty of moments of clarity when we could have talked about these things.

Whether he would have wanted to, I will never know. My own fear paralyzed me from asking.

Because I did not ask questions or learn about death and dying, my experience as Patrick’s care partner contributed to my diagnosis with PTSD six months after his death.

Some of that trauma came from the months we spent living in the hospital and the severe behavioral changes caused by his tumor. Much of it came from replaying the final week of his life, and the night he died, over and over in my head.

As a 31-year-old widow, I was suddenly afraid of the dark. I could not stand to be around people, but I was terrified whenever I was alone, which was most of the time.

I thought about watching his once robust body seemingly fade to nothing overnight. I remembered administering morphine around the clock and trying to get anti-epileptic medication into his body after he could no longer swallow.

I recalled being on edge whenever I noticed the slightest change in his breathing during those final days. The only thing I knew about a “death rattle” came from a Google search beside his bed.

I felt responsible for making sure Patrick was not in pain at the end, and I was desperately afraid that I had not done enough.

The underlying theme of all these memories was fear.

Fear of the unknown. Fear of losing my best friend. Fear of how I could possibly continue living after the love of my life was gone.

Instead of confronting those fears, I buried my head in the sand until Patrick was actively dying. It is no wonder that I spent the next several years trying to dig myself out of the dark and frightening place I entered after his death.

I lost more than a year of my career as a lawyer because anxiety, depression, and PTSD made it impossible to keep up with the demands of my job. I walked away from relationships because I did not believe anyone could understand what I was experiencing.

I became isolated and frequently suicidal. It took years of therapy and spiritual work to return to any semblance of a “normal” life. I am still forever changed.

I attribute much of my suffering to my own ignorance about death and dying, an ignorance reinforced by our culture’s silence around the subject.

My work as an advocate for the brain tumor community has given me a much greater familiarity with death. I now feel more than a willingness to discuss it. I feel a desire to.

I share my experience in the hope that others will confront the difficult subjects I was too afraid to approach and learn about the physical process of dying before they are called upon to witness it.

It is never too soon to learn about death. It can certainly be too late.