Remember the part of your marriage vows that covers loving each other in sickness and in health? Would the vows still be relevant if your partner awakened from a coma as a very changed person? The issue of rebuilding marital relationships while composing a new life has received much-deserved attention in three media venues this week.
On Sunday, Susan Baer's cover story in the Washington Post magazine delved into the life of Page and Robert Melton before and after Robert suffered an anoxic brain injury. The couple had two very young daughters when Robert's heart stopped in 2003. After rehabilitation, Robert fared best living in an assisted living facility and enjoying frequent visits with his family. Page devoted herself to Robert and their girls without intentionally seeking another love relationship.
The Melton's story is told with courage, honesty and respect for the perspectives of each family member. As I read the article, I was struck by the parallels between Robert and my husband Alan, a physics professor who also sustained an anoxic brain injury that robbed him of many cognitive functions, limited his functioning, and changed his personality. We did not have children, but I often yearned for the husband and marriage we had before Alan became ill.
Over the years, Page cultivated an unconventional arrangement that assured that she and her daughters could lead a fresh and fulfilling life while also honoring her commitment to Robert. I'm not going to give away the details because you really must read the article firsthand. But before you read, take a moment to consider how many ways your partner might change as a consequence of brain injury. And how many ways you might expand or constrict your definition of love in response.
Changes impact relatiohsnips
Regardless of the type of brain injury, many survivors struggle with changes in memory, communication, behavior, intellect, and even personality. Some of these changes improve with cognitive rehabilitation, but some are permanent. The couple may need to get to know each other all over again, as Alan and I did. Imagine feeling like you're on a first date even though you've been married to this person for 5, 11, or 30 years? And that a second date might not be in order.
I remember a relaxed Sunday morning early in Alan's rehab hospitalization. We'd shared a romantic Saturday evening in the unit's "practice apartment" and were now sampling the scrambled eggs Alan had learned to prepare in OT.
Alan leaned back in his chair and fixed me with a debonair smile. "Tell me about yourself," he said. "I really don't know anything about you."
Before telling him my name (for the 108th time), I thought, "This is like a bad flashback to the 1970's, but I've been married to this guy for eleven years."
Memory loss was an easier change to embrace than Alan's depression, anxiety, and behavioral outbursts. Alan's moods could swing erratically. He'd say profound and wonderful things while happy, then cruel and angry things when in the throes of self-loathing and depression. We became experts at preventing outbursts as much as possible, adjusting our expectations, building on his strengths, juggling medications, and finding new ways to communicate and express affection.
On Sunday night, the country watched as Rep. Gabby Giffords and Mark E. Kelly spoke together at a memorial event marking the first anniversary of the horrific shooting that killed six people, injured twelve, and caused Gabby's TBI. While the couple has shared so much of their journey with the public, we can only guess at the wounds their hearts are still healing. Even with the benefit of extraordinary medical care and the most intensive rehabilitation, every couple touched by brain injury lives with the scars of trauma, loss, confusion, and starting over. Even while celebrating progress, facing new realities, and adapting to catastrophic changes.
In today's New York Times, Sarah Wheaton interviews several couples who have struggled with the perplexing obstacles brain injury imparts. Ms. Wheaton points out that, even though the need is enormous, few psychotherapists specialize in counseling couples affected by brain injury. Rosemary Rawlins was diagnosed with post-traumatic stress disorder (PTSD) after caring for her husband for years. In my experience as a psychotherapist and support group facilitator, I've met many caregivers who experience an unrecognized post-traumatic response or, indeed, PTSD from the unique trauma and stress of orchestrating and providing care for a partner with brain injury.
I believe that it is imperative that caregivers and survivors share our experiences, trials, and resourcefulness so that we can educate others, raise awareness of the most troublesome aspects of brain injury, and campaign for better research and therapy approaches to family issues. It is also imperative that we all, professionals and the public, listen carefully, reserve judgment, and offer assistance.
There can be numerous blessings and positive gains associated with learning to love a person changed by brain injury. In this post, I'll share some tips to keep love alive after brain injury. In my next post, I'll tell you how we dealt with the darker, scarier challenges of living with a very changed person. In my book, Professor Cromer Learns to Read: A Couple's New Life after Brain Injury, I offer an honest exploration of the new marriage of "Another Alan" and "Another Janet" - my names for the new couple we became.
Five Tips to Keep Love Alive
1. Acknowledge and grieve losses and changes before deciding to commit to a new relationship with the survivor. Talking with a therapist, minister, or support group might help.
2. Appreciate and celebrate small steps forward together. Teaming up can form a strong bond and shared purpose.
3. Find mutuality in other relationships. The survivor may not be capable of knowing and supporting you in the mutually affirming way we expect of mature relationships. Consider finding mutuality in other trusted relationships rather than holding unrealistic expectations the survivor can't fulfill.
4. Be open to new and different reasons to like, then love this person.
5. Branch out from entrenched roles. I was often the teacher and rehab coach, while Alan was the student relearning everything. We both benefitted when I was the student and Alan taught me how to make a craft project or walk our dog his way. We all become empowered by sharing what we know.