I was very moved by “Between Two Kingdoms” and wholeheartedly recommend the book. Saleika Jaouad writes about her life before cancer and after cancer. Her words on pain and healing are bittersweet and full of wisdom:
“I used to think healing meant ridding the body and the heart of anything that hurt. It meant putting your pain behind you, leaving it in the past. But I’m learning that’s not how it works. Healing is figuring out how to coexist with the pain that will always live inside of you, without pretending it isn’t there or allowing it to hijack your day. It is learning to confront ghosts and to carry what lingers. It is learning to embrace the people I love now instead of protecting against a future in which I am gutted by their loss.”
“Between Two Kingdoms: A Memoir of a Life Interrupted”
by Saleika Jaouad
For almost five years, I facilitated support groups for caregivers who were caring for people with dementia. I have witnessed the myriad of ways in which people grieve. I have seen the anguish in their faces and heard their desperate questions that had no answers. Pain etched on a sleepless caregivers face. My husband Roger died from dementia in 2015, so I too live with grief. With dementia, a caregiver’s grief/pain begins the day we recognize “something is wrong”, we may not have a diagnosis yet but we feel a loss we may not even be able to name. There is pain and more pain to come as dementia progresses and our loved one eventually dies. The best we can hope for is to travel the dementia journey with our loved one with grace and compassion. Pain is inevitable, we will not escape it, but perhaps as Suleika suggests we may learn “how to coexist with the pain”.
Caregivers have asked me how long grief lasts, and I always answer “Grief does not end.” What do I mean by that? I know if I think that on July 15, 2021, my grief at losing Roger will end, I’ll be disappointed, in denial, and cause even more pain for myself. Grief does not go away. I believe our lives are transformed when we allow grief to mold us, teach us and soften our edges. I think Suleika is saying this when she says healing “is learning to confront ghosts and to carry what lingers.” Grief is not something to tame or control, it will always be wild, but we can learn from it and go forward without looking at it and feeling it every minute of every day. As Suleika says we don’t have to allow grief to “hijack” our days. When Roger died my days were consumed by grief and shadowed by memories, but I still walked the dogs everyday. I made my bed everyday. I loved my son and listened to him and my sisters and friends. I continued to put one foot in front of the other, and sometimes I’d have to stop because I was doubled over with grief. And repeat…
Laughter and humor “coexist” with grief. We can laugh at the absurdity of life and death. Caregivers are a boisterous bunch. All emotions are ready to be pulled out of the quiver of arrows on our back. Grieving is messy, unpredictable and mysterious. Suleika found there are a ghosts to fight with and the pain of the unknown. We can’t put our pain in a pretty box, put it on the shelf and take it down every now and then when it is convenient for us. There is no “place” to put grief. It is everywhere in the air and water and no vaccine exists to make us immune to pain. When I looked at my son’s newborn face I was overcome with love for him AND overcome with fear of harm to him or losing him. I knew there was no way that I could escape the love or the pain. It was hopeless. The act that sustains us and requires the most courage is loving another human being with our whole heart, even when, especially when, we are hopeless.