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Chronic Pain
Pain, Ambiguous Loss and Acceptance
Acceptance means holding both a painful now and a hopeful future in our minds
Posted June 26, 2016
Ambiguous loss
Death can be a harsh shock, as someone is ripped from us and is no longer present in our lives. It has a finality to it - that's part of the shock and much of the pain. But it is real and concrete. Ambiguous loss is fundamentally different, in that it is a loss where we are simultaneously confronted with two simultaneous states that can't be resolved.
- A husband is kidnapped and we don't know if they're alive or dead;
- A mother has Alzheimer's dementia and looks so much like the person who loved and cared for us, but doesn't know our name;
- A child is swept away by a flood and they cannot find her body;
In these example of ambiguous loss, we must hold two ideas - living or dead - in our minds and hearts simultaneously. (See a discussion by Pauline Bloss on ambiguous loss and the myth of closure.)
Ambiguous loss can also be there when we hold two simultaneous ideas about someone we care about. A parent with dementia is an example of that - we hold in our mind both the person they were and the person they are. But we can have the same feelings about a child born with a severe disability. At every milestone, we may mourn the things they have not done - the first steps, graduations, and friendships that they miss - just as we celebrate and love the people they are and the accomplishments they have.
I was thinking about ambiguous loss with regards to the parents of children in pain. Because my own son has spent so much time in debilitating migraine pain, I have spent a great deal of time talking to other parents of children in pain. There are many wrenching emotions common to parents with severely ill children - guilt, anger, and helplessness loom prominent. But l also frequently hear just cries of loss for the life their child doesn't have - for the friendships not formed, the graduations missed, the proms left early, the sleepovers that never happened. And always this idea that their child has two lives - the one they are living and the one they would have had without the pain.
For kids in pain there are also two alternative futures - a future with the pain and one in which the pain is gone. Everyone's future can go in many possible paths. But this difference is particularly stark for kids who are chronically ill. Holding simultaneously to those two futures - one you need to plan for, one desired - is hard. Especially as a parent, where it is so easy to give in to guilt if that hoped for life without pain doesn't appear. There are so many imagined what ifs: What if I've chosen the wrong doctor? What if sending him to school is making him worse? What if there's a cure out there I've missed?
Acceptance
In pain circles, they talk a lot about acceptance. I have always thought of acceptance as learning to be comfortable with how things are. That's not something I am good at. Especially when what I thought I was supposed to get comfortable with is my child living in pain - forever.
I saw acceptance as passive.
In workshops this week for parents of kids in pain, though, I found I was wrong. They talked about acceptance as something active that one chose for the day.
TODAY I know my child is in pain. And today I will help him live the fullest life he can, taking that pain with him into the world instead of curling up with it in his bed.
In other words, learning to accept that the pain, right now, is their reality. Living with that reality - fighting to make their experience joyful in this moment right now - is acceptance. Knowing that tomorrow might be different. FIGHTING for tomorrow to be different. But putting most of one's effort into improving the NOW and living the NOW instead of waiting for something better in an ambiguous future.
That was a new concept to me. Thought of in this way, acceptance is an active verb, not a passive state.
Acceptance and ambiguous loss
Which brings me back to ambiguous loss. The defining quality of ambiguous loss is its dialectical nature. As with Schroedinger's cat, we must live with two antithetical potential realities. Living with a chronically ill child is like that. We have the reality of our child and the person they are and the life they live. They have been fundamentally shaped by their experiences and their illness is part of what has made them who they are. But we may also live with the life they might have lived without their illness - their ghost past. That is the child we may mourn.
Similarly, we fight hard for two possible futures: with and without pain. So I fight every day for my son to seize his day and put his mind and his self somewhere other than where his pain lives. THAT is acceptance. But I also hold part of my energy - my hope - into looking for another future reality for him: a future without pain.
Living in that dialectical future is hard. It takes a lot of energy. But doing so allows me to hold on to hope without sacrificing today for a maybe tomorrow.
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Two excellent books on parenting children in chronic pain:
- Conquering Your Child's Chronic Pain by Zeltzner and Schlank is an excellent introduction to how pain works and techniques for coping with it. I hate that title, but it has helped me tremendously. My son has also read it and found it very useful.
- Managing Your Child's Chronic Pain by Palermo and Law is another excellent book. It is more of a workshop approach and is aimed at parents who don't have access to a pain clinic. They include a lot of 'how to' techniques on relaxation. They have deep breathing exercises here.
A collection of my posts on parenting a child with chronic pain and helping them to return to functioning: This includes all the essays below plus others on helping kids return to school, keeping kids organized, general parenting, and the frustration of dealing with people who just don't get it.
Related posts:
- What NOT To Say To A Person Who Is Suffering
- Kids in Pain Part I: Chronic v. Acute Pain
- Kids Who Go To School In Pain
- Getting Kids in Pain to School: Tips From the Trenches
- Withdrawn Irritable Kid? Is It A Migraine?
- Getting Kids To Do Things: The Foot In The Door (how to help kids in pain get back to their lives)
- Disability? In College? Advice on Talking To Your Professors (If you are in this situation, I urge you to read the comments section as well, which has many thoughts from students.)
