Parents Speak Out > Care vs. Cure
By Kara L.C. Jones
KotaPress Editor
Many years ago, I discovered something called "A Course In Miracles." Actually, I discovered Marianne Williams and her wonderful books that are a sort of short hand for the full "Course." Though my recall of the whole "Course" is dim, there were parts of the Williams' books that have just stuck with me like glue. One of those ideas, was this:
[paraphrasing] "A miracle is simply a shift in perspective."
That phrase is with me, rolling around in my heart and mind, every single day. And it is an idea that has been greatly challenged since the death of my son four years ago. We not only endured the loss of our son, but the loss of a great many people who were supposedly family and friends. Many people just felt that we should "get over it" at some point or another, or they didn't even think "it" was a great loss. Of course the "it" is our precious child -- to whom we will forever be parents. This was a difficult concept for most people to understand. They would say things like, "You can't parent a dead child." But it was a simple change in perspective that salvaged some of those relationships. I would reply with something like, "So when your mother dies of her cancer, you're telling me I can expect you to stop being her daughter, stop celebrating her birthdays, and expect you to stop talking about her by say, three years from now, right?" Hmmm...thought provoking at the least.
This kind of battle, this perspective-changing-mission, took on epic proportions eventually. I began doing bereavement support and outreach to other bereaved parents. I began hearing the horror stories of what they had endured in terms of how family and friends had treated them. Let me give you a few anonymous examples, no names, a few details changed to protect the privacy of the bereaved parents:
- There was the woman whose adoptive family simply never saw her again and has refused her phone calls after they were called to the hospital to see and say goodbye to her stillborn child. This was the family who had raised her, bought her graduation presents, gave her advice, had been an everyday presence in her life since she was a young child. It has been over 5 years since any of the people in her adoptive family have talked to her.
- There was the family where the bereaved mum was told "Sh*t happens to all of us, and we deal with it." [editor's note: "Sh*t" being the woman's precious dead child!]
- There was the family where the bereaved mum was told she had to stop talking about "it" or risk going "crazy" like her great-granny had. Her great-grandmother had had a stillborn and was called "crazy" because she included the dead child in her everyday conversation or remembered the child at holidays.
- There was the woman whose family told her she was not welcome to their winter holiday celebrations if she was going to bring up "that" subject. "That" of course being her child who she was desperately missing -- it was only the SECOND Christmas since he had died!
- There was the woman whose cousin told her that she should be glad her child died because there was probably something wrong with it-- oh and added that since she had miscarried, it really wasn't a child anyway.
- My own grandmother has refused to see me until I promise to not bring up "that dead child" again -- of course that dead child was her one and only great grandchild, but why have a heart about IT?!?
- And then there are the stories of people who have sought help from counselors or therapists. Many have fortunately found wonderful help. Some have found disasterous help from people whose licenses should be revoked. Some schools are still training the "professionals" in the US to believe that grief has a time-line, that it comes in stages, that a woman who is sad on her dead child's 20th birth/death day anniversary is a woman with "complications" who needs more help. And in those situation where the "professional" hasn't yet had a Miracle-Of-A-Perspective-Change, well, they've added guilt on top of the grief. They guilt the parents into thinking there is something wrong with them since they can't get over this grief thing!
Ugh. Epic proportions of change are needed. But it is coming. The MISS Foundation is making that perspective shift happen every year at their Passages Conferences where more and more professionals are being trained or re-trained on what short- and long-term care of bereaved families should/could look like. Many of the bereaved parents themselves are speaking up to give that different perspective. They are sharing things like this:
You tell a couple that they are having challenges because of the gender differences in grief. I say that if you take a lesbian couple where a child has died, they will not grieve the same and may hit rough spots in the relationship. Are you going to tell them that their problems with grief are based in gender differences? NO! So maybe we need to revisit the fact that all PEOPLE grieve differently.
You can't understand why a family would want to remember a dead child when they have other living children to care for in their everyday lives. I say that just as you are a parent to ALL your living children, so, too, are you a parent to your dead children. I say that when a family closets the dead children -- especially those who died due to stillbirth or genetic problems -- then the surviving and subsequent siblings are cheated out of their own FULL medical histories. If there were stillbirths in a family that were never talked about because those children were never remembered, then when the surviving or subsequent children grow up to start their own families, they will not know they are "high risk" medically. That is cheating your children out of knowledge that is rightfully theirs.
You can't understand why a parent would want to celebrate the birthday of her child who has been dead for 5 whole years (or 10 or 20). So when your mother or spouse dies, are you going to forget when their birthday was? Are you going to stop honoring their memory on those special days?
You don't understand why the parents want to be recognized as parents if their child is dead. So when your mother dies, you will stop being her child, right? And we can expect you to stop referring to yourself as someone's daughter or son, right? And we can expect that you will throw away all the photos and memoriabilia about your mother because you are never going to mention her again, right?
Okay, my point here is this: We have to look at new ways to offer support to the bereaved. We have to shift our perspective on grief. We have to stop thinking that grief is a sickness, something to be pathologized. We have to start thinking of grief as a NORMAL response to the death of someone we loved very much. We have to stop trying to CURE grief and instead start CARING for the bereaved in the short-term and in the long-term. We have an ethical responsibility, as Joanne Cacciatore-Garard says in her book Dear Cheyenne, to not leave heart-broken, bereft, wailing, isolated, torn-apart parents alone to deal with grief. We are responsible for the CARE of others. We need to step up to the plate and look at CARING for each other in better ways.
And finally, to ultimately make my point, I'll illustrate what I'm talking about by sharing two quotes. If you still don't get it, then get yourself some sensitivity training or attend a MISS Conference or just create a miracle for yourself by shifting your perspective!
"A major difference between care and cure is that cure implies the end of trouble. If you are cured, you don't have to worry about whatever was bothering you any longer. But care has a sense of ongoing attention. There is no end. Conflicts may never be fully resolved. Your character will never change radically, although it may go through some interesting transformations. Awareness can change, of course, but problems may persist and never go away. Our work in psychology would change remarkably if we thought about it as ongoing care rather than as a quest for a cure."
-Thomas Moore, excerpt from the book Care of the Soul, chapter Honoring
Symptoms as a Voice of the Soul, section Care vs. Cure, published 1992
"You will not be cured,
But...one day -
an idea that will horrify you now -
this intolerable misfortune will
become a blessed
memory of a being who will
never again leave you.
But you are in a stage of unhappiness
where it is impossible for you to have
faith in these reassurances."
--Marcel Proust
1871-1922
.
About the Author
Kara has been using poetry and other expressive arts tools on the grief journey since the death of her son in 1999. Her poetic and non-fiction works have been included in publications such as New Works Review, PoetsWest, Real Henna, Shared Heart Foundation's "Meant To Be", LightHearts Publication's "Soul Trek", MISSing Angels Newsletter, American Tanka, Mother Tongue Ink's We'Moon, Honored Babies, Cup of Comfort series, and more. She is a Carnegie Mellon graduate who co-founded KotaPress with her husband Hawk Jones. Her books "Mrs. Duck and the Woman" as well as "Flash of Life" have both been released thru KotaPress. She is currently in an apprenticeship working toward Master level of Reiki. And she founded HennaHealing.com where she is exploring the ancient art of henna and its uses for ritual and healing.
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