Dear Dr. Neimeyer,
My 26 year old son died 7 years ago after a prolonged battle with a malignant brain tumor. I was his caretaker. He was my first child and my only son. Our relationship was magnificent. I can’t get a grip on the good memories. I am constantly thrown into a grand mal seizure or the vivid memories of the day he died. How do I grab the good stuff? He was a very funny, very good man and extremely well supported by his community. I miss him so much. I have a broken heart. I do have both talk therapy and psychiatric care.
Even with the brief glimpses you offer of the course of this illness that you aptly describe as a battle, it is easy to imagine that you suffered keenly alongside your son as the whole family contended with this incurable form of brain malignancy. Although some of his symptoms likely were mitigated by treatment, it is clear that many were not, and the seizures you mention must have served as a vivid and traumatic reminder of the limits of medical care and your own ability to spare him the ravages of this illness. That he grew to be a decent and well-loved man, and one who cultivated a unique sense of humor despite the presence of the disease, speaks volumes about him, as does the obvious depth of your connection to each other.
And so there is a kind of double tragedy in feeling as if the good memories of his quarter century of living have died with him. Sadly, this is often the case when the manner of dying was traumatic, when visual images of what was witnessed or imagined overshadow memories of the life that was ended. In such cases more is needed than supportive talk therapy or anti-depressant medication, though these may have a role. What is often required is a trauma-informed therapy, one that specifically helps the bereaved person take in and master the horrific imagery, so that the warm, proud and loving memories can come through.
One such practice is called “restorative retelling,” essentially a slow-motion review of the event story of the dying–and in your case, perhaps the terrifying imagery of the seizures as well. A therapist trained in this method of prolonged exposure can help you stand in the distress through the use of breathing exercises or other means of self-soothing, while you give voice to the visual, auditory and other sensory details of the traumatic and troubling moments in that account, sometimes doing so in 10-15 minute intervals that are repeated across sessions, and sometimes in one or two more substantial immersions in the story. The goal is to give voice to precisely the parts of the story that have been silenced in an attempt to protect others or the teller herself, rather than try to suppress them. A good deal of research suggests that such suppression actually makes distressing emotions and images all the more preoccupying, as they seem to press into consciousness with the demand for fuller processing.
Obviously, this approach, along with other exposure based therapies like EMDR (which requires holding the images in mind, but not necessarily giving them voice), is strong medicine. As such, it is wise to be accompanied by a therapist to help prevent the feelings that are triggered from becoming overwhelming. Personal journaling about the painful details of the death, alternating with sessions in which the therapist assists with reviewing the written story, can also be valuable. But whatever your form of exposure to the trauma story, recognize that you are in effect clearing away the dark cobwebs of your son’s death that currently obscure your view of his life, making room for the consolidation of healing and loving memories of him in conversations and rituals, as described in other discussions of “legacy projects” included in letters to other readers. In this way, if well accompanied, you can reach through the darkness toward the light, and find a more sustainable way of holding him.
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