The pain of a significant loss never fully goes away. The pain becomes more manageable, but still exists. Since my husband, John, died in 2017, I have managed and survived grief. I will share with you my personal journey from how it started to hope to healing.
How it Began
John was hospitalized after a massive brainstem stroke at home. It was a seemingly ordinary Saturday until he said he had an excruciating headache, then screamed in pain, fell onto the bed, and passed out. I called 911 while he was still screaming in agony.
He took a medivac from the local hospital to a larger hospital since they told us that they did have the capacity for the neurological treatment he would need at our local hospital. They intubated him before transferring him, with my permission, but I knew that wasn’t good.
There’s Bad News, and Very Bad News
They sat us down in the family gathering room once other family members had arrived to tell us that John had suffered a brain stem stroke and that it was highly unlikely he would survive. He was still alive but unconscious and was going to the ICU to be monitored after some additional neurological testing.
Once he was placed in a room, the nurse handed me his clothes and his wedding band. Honestly, I don’t remember all the initial details other than they don’t gather everyone together in a special room to tell you good news. It was bad, very bad news. Devastating and life-changing news.
John survived several nights in the ICU, which we thought was a good sign. However, the staff at the hospital gave us graver and graver news that there was irreversible damage to the life-functioning part of his brain, the brain stem. They said that if the stroke had affected another part of the brain, they could do surgery, and there would be hope of survival. However, the brain stem was like a piece of ‘cauliflower’ and could not withstand any suctioning of blood without incurring further damage.
Can I Talk To Him?
After he had been in the hospital for several days, one of his doctors told me that if I wanted to try to communicate with him in any way, now would be a good time. I was extremely doubtful I would be able to communicate with him since he was considered by medical definitions to be ‘mostly brain dead’ and on life support for ventilation. He was unconscious and unable to move any parts of his body, to my observation thus far.
This clinical explanation was super confusing because parts of his brain still functioned. Still, the part of the brain controlling life functions, like breathing, temperature, and blood pressure, the brain stem, was not functional. When the brain, including brain stem function, cannot be proven, clinical death occurs, but he was still alive only due to life support, but technically alive.
How Do I Ask You About Dying?
I went into his hospital room and asked John if he could hear me. His eyes were closed, but I asked him to open them if he could. To my great surprise, he opened his eyes. I was stunned! I thought quickly and said, “I want you to look up for yes and look down for no, so I can ask you some questions.” This seemed unbelievably surreal, since many days had passed without any life signs, aside from his pupils reacting, let alone the ability to move any body part.
Moving His Eyes
I had spent many years working as an assistant in ophthalmology, and using the eyes to communicate seemed appropriate. I asked him some careful questions. Did he know he had a stroke? I waited to see if he could move his eyes. Yes, he looked up!! Did he know he was in the hospital? Yes, again he looked up. Are you scared? No, he looked down. We had been married for over 20 years, and every decision, big or small, was always discussed together.
Advanced Directive
John had an advanced directive. All the medical advice I had been given had been to remove life support and let him go, as he had no quality brain functioning and would not survive without breathing support and massive other support mechanisms for maintaining life.
Our Final Conversation
We were a team, and I had no idea how to make such a major decision, even with a directive in place. The next question I had to ask made my stomach drop, and I felt ice cold and shaky. John, do you want to stay with us like this, on life support? His eyes went immediately down, and then down again, NO. Again, I was beyond stunned that he understood the brevity of the situation.
He was in a grey area between life and death from my understanding of their medical definition for him, and suddenly it felt like a real conversation with him. I was terrified and felt like I could not breathe because that meant he probably knew what my next question would be. John was incredibly smart, IQ off the charts actually, and was always one step ahead of everyone. Are you sure you want me to take you off life support? He looked up several times in a row. YES. YES. YES.
Reassurance for John
I had an answer from John. I told him that I would take care of everything. I began to cry and sob. I don’t want to say goodbye I said. This is so awful and unfair. I also knew I needed to reassure him in that moment, to let him know that I would take care of everything and carry on for our daughter and me.
John was our rock and was unflappable in any situation. He was the person people looked to for wisdom, life decisions, and helpful advice. A solid presence in our lives, offering worldly advice with kindness and humor. I couldn’t imagine how I was going to navigate life without him.
That heartbreaking goodbye was the absolute worst thing imaginable, but I am grateful for that small window of communication because it was the last one.
Final Question
My final question to him was: “Do you want to communicate with our daughter to say goodbye?” He did not answer, and then a minute later, when our daughter came into the room, he did not move his eyes again. Our daughter was his pride and joy in every way imaginable. He simply could not say goodbye to her.
His Medical Decision
John had teams of doctors in the ICU. Some were blunt with their advice, and in my mind at the time, cruel, because they kept saying things like the lights were on, but nobody was home, or compared his brainstem stroke to a grenade exploding inside his head. Nobody has ever convinced me that doctors are great communicators. One female physician was helpful because she asked me to consider what my husband had already decided in his advanced directive.
To be fair, I was in denial about my circumstances, and bluntness may have been the only option for them.
How is this Reality?
Making the next step to remove life support was intense and horrific. I was reminded again that John already made the decision in writing, so it is technically his decision. Even so, I struggled.
How could I let go of a 49-year-old man who had been talking, making jokes, and answering complex questions at work for an intelligence agency the day prior to his stroke? How is it even possible that he is brain-dead while his body still looked perfect, and he looked like he was just sleeping?
After He’s Gone: Surviving
After he passed, I immediately felt some relief that he went peacefully the way he wanted to. I was so mentally exhausted afterward. Of course, I never ever wanted him to die, but once he passed, it did give me some peace for a brief time. He even smiled after he took his last breath. His facial expression changed to a joyful one, as if whatever he had felt or seen after leaving this Earth was a great joy to him. His expression was that of a man who had come home, so happy and content. His brother was in the room with me when he passed, and he saw his expression change to joy with amazement.
He’s Gone and My World Ended
After the devastating loss, I had no idea how to continue. How would I deal with such a devastating life change? My intact family was shattered, and now it was only my daughter and me. The world continued to function without our participation. Getting out of bed was impossible. My daughter camped out in my bed with me.
He died in March, and we didn’t emerge until May or June. Our cat never left our sides, stayed with us vigilantly, knowing that something drastic had happened, and sensed our devastation. Animals sense human stress, and this was a difficult time for the cat too.
John’s brother came to stay with us and helped us survive those first few months. Friends, family, and neighbors checked on us, but we didn’t have the energy to talk. Talking to people would have made it more real, and that was not something we were ready to deal with yet.
How Do I Stop the Pain?
The stages of grief include shock and denial, and numbness. Numbness is helpful in this early stage because the pain is truly unbearable later. Shortly after John died, I sought out a structured plan on how to navigate this pain and survive it. If I somehow managed to complete “grief tasks,” I thought I could survive this.
It turns out that grieving is a lot of work, and it is exhausting to the mind, body, and spirit. There are no specific tasks to complete; it is a matter of processing some incredibly overwhelming emotions and raw feelings that were nearly impossible for me to express in words.
For the first year or so, every morning that I woke up, I couldn’t wait until it was time to go to bed again. While I was sleeping, I didn’t have to feel the intense energy of the constant pain in my mind and body.
Mental Health Professionals
I sought the help of a therapist for myself and for my daughter, not long after he passed. I went twice a week shortly after the funeral, if I recall correctly. I would cry for practically the entire hour. Many people are uncomfortable with crying and sadness, and thankfully, my mental health professional knew how to handle this gracefully.
Sadly, not all mental health professionals know how to handle grief in the initial stages. That stark realization about therapists surprised me.
Maintaining Boundaries
While I was able to ‘cry it out’ with my therapist, when I took my daughter to see her therapist, she sat me down and told me I was too stoic and needed to show more emotion in front of my daughter. In my mind, someone needed to remain the structured adult handling things and maintaining life. I was the responsible adult, with enormous responsibility on my shoulders.
She also told me that I should have gotten rid of everything of his in the household to come to terms with accepting the loss. He had been gone for a month at that point. We later sought a therapist who was able to provide coping mechanisms specific to her needs.
Healing After Loss
I learned that I had to be honest with myself about the enormity of the loss. Only I could find ways to cope that worked for me. That knowledge of healing yourself is both a burden and a source of freedom.
1 Recently, I learned from a webcast by David Kessler and Hope Edelman that children process grief quite differently from adults. They don’t have the wiring in their brains to fully understand a significant loss such as the death of a parent. They will feel alone and bewildered, and studies have shown that the loss of a parent before age 20 causes attachment trauma. The loss of a parent is enormous and takes a lifetime of coping and supportive people in place to heal.
Hope After Spousal Loss
Our brains are remarkable and can be reprogrammed while respecting the person you lost. I have realized that only I can control the ugliness or the beauty of the relationship with grief. You may be wondering what, if any, beauty exists in grief? When I came to a certain point in my grief journey, after feeling despair, self-pity, disorientation, confusion, anger, rage, and finally some peace, I found that I had developed an enormous empathy for others with profound loss.
Therapy can be an extremely useful tool. It helped me to figure out a way to navigate all the feelings related to grief. I knew I needed to allow myself to heal with self-compassion and learn to give myself and others who are trying to help grace. The ability to be kind to yourself is a tool that I continually fine-tune.
How to Thrive
Every grief journey is different because all relationships differ, but there is a universal truth in grief in that you must allow yourself the space to heal, and then you have to move forward in the best way possible. I moved forward by realizing that everything I had in the past was over, and that seems like a terrible thing, but there is a possibility of continuing to live life with new memories yet to be made. I met some special people that I would not have had the opportunity to meet in my past life with John, and that is because of the loss. I chose to start over in a new location.
Some Coping Methods
If, like me, you are seeking concrete ways to manage grief:
- I recommend mindful breathing, such as 4-7-8 breathing, especially in the early stages.
- Breathe in for 4 seconds, hold your breath for 7 seconds, breathe out for 8 seconds. This relaxation technique helped me fall asleep.
- Create a memory box when you feel ready, with pictures or other items you hold dear from your loved one. It can be only for you, or you can ask other loved ones to contribute to it.
- Journaling can be helpful, and making lists of things you are grateful for.
- Practice mindfulness, which is merely living in the moment without worrying about the past or future.
- I found the practice of yoga to be extraordinarily helpful, but it took a long time for my body to adjust to the poses.
Recommended Resources:
These recommendations are my own, and I am not being paid or sponsored.
- Healing After Loss, Martha Whitmore Hickman
Questions for the reader:
- What has helped you in your grief journey?
2. Does self-compassion help you?
Footnote:
The Six
Pillars of
Early Parent
Loss.
by Hope Edelman & David Kessler, A David Kessler Training, Grief.com, 2026
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