Wednesday, February 27, 2013

Commentary on Brain Injury and Marriage

I read the article 'When Brain Injury Tears at the Heart' by Sarah Wheaton, published New York Times, January 9, 2012. I found it disheartening that couples are continually warned about the devastating changes introduced by a brain injury and the effects it has on marriages, with divorce as the likely outcome. I have met many survivors, but I'm particularly interested in hearing from their partners, who have their own diagnosis, it is called helplessness.

Consider the traditional wedding vow: 'I, John, take you, Jane, to be my wife from this day forward. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.' Perhaps, there should be a head injury clause--'but if you become a completely different person, the union is null and void. The state of the marriage prior to the injury will be a good indicator or what will happen afterward. A strong marriage where happiness and forgiveness are cornerstones, can withstand the overwhelming mutual grief and guilt that typically occur post-injury. The afflicted partner takes on the burden of guilt for saddling the other with the caregiving role, while the caregiver becomes frustrated and may feel resentment at the detour the marriage has taken.

I have become friends with a couple from Canada. Mike, a stroke survivor, has left-neglect, which is how we became friends, as left-neglect is my pronounced deficit. But more important, post-stroke, Mike underwent a profound personality change. Prior to his injury, Mike was a governmental analyst, which suited his personality--quiet and guarded. Post-stroke, he became outgoing and spontaneous (medical professionals often call it impulsive, but I believe spontaneous gives it a better spin). His wife Sue said, "It's like living with a completely different person; he's not the person I married." They are making their marriage work in spite of the drastic changes. Mike has new interests that were not on his radar pre-stroke. He now sings and acts and by all appearances enjoys life to the fullest. He even got a tattoo, and a sizable one at that, in tribute to his left neglect. Sue is adjusting to the 'new Mike' and is falling in love with a new person. She says it’s almost like a second marriage.

 As Mike says, "Post stroke marriage is certainly an interesting area, both potentially good and bad.
In our case I seem to be dealing with what happened easier than Sue does although I long for the old days. I believe I had the easier part and it was more difficult on my family than it was on me. Over time we have moved on to a new " normal" and the event has slipped more into the background."

Sue's personal commentary on their marriage post-stroke is a haunting reminder that the injury equally effects both partners in the marriage. "Our lives were in a constant state of transition for four years of the last five and it has really only been the past year that I can say that I am becoming comfortable with the new relationship. I am working hard at accepting our current lives which in many ways is better than pre-illness however what I struggle with are the little reminders of the early days of the illness and the recovery - the well-meaning conversations about Mike's illness, the anniversary of the event (around Christmas), the things you used to do and struggle to do now. Not big things but reminders just the same. I want to put that period of my life in a box and place it on a shelf far in the back of the storage room. I will know it's there and what the contents are but don't have to look in unless I want to. There are two brain injury victims, the victim themselves and their partner. It is a very lonely journey."

I met Donnie at a brain injury conference where I gave the keynote address. Donnie, a roofer, sustained severe head trauma when he fell 45 feet to the ground. He is married with two children, but cannot remember them; he can't even recall their names. He has an annotated photo album attached to his wheelchair which is in effect his story and his history. Unable to converse or make small talk, he hands the album to anyone who engages him, as a way of explaining what happened to him and who he used to be. In contrast to survivors who remember, but cannot control their emotions, his injury not only changed how he interacts with his wife and family, but how he is with anyone he encounters. Although he is the same husband and father in appearance, he is no longer the person they knew. I believe regardless of the injury the true essence of a person remains unchanged. This is what loved ones cling to when working toward recovery.

In my own experience, I was severely disabled initially and required constant supervision and care. I loathed that my condition made Jim less a husband and more nurse and caregiver. I remember a good friend joking, "Poor Jim, he’s really screwed now. He couldn’t possibly leave you now even if he wanted to." Although it was said in jest, it struck a chord with me. I knew that it wasn't exactly what Jim bargained for when he said 'I do.' My injury became the focal point of our lives. It not only controlled what we did as a couple, but it also drove our conversations. I wanted Jim to remain married to me because he was happy and still in love with me. It wasn't until my condition stabilized and I became less dependent that I could wrest control back from my injury. With that milestone, I said no more will this dominate our lives. When Jim came home from work that night and started with the usual solicitations (how are you feeling? how’s your head?), I said, "We are no longer going to discuss my injury. It is out of the driver seat and stashed in the trunk. Tell me about your day."

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