Grief is more than a manifestation of untreated or poorly or late-treated brain injury. Losses come, but they remain lodged in the brain when objective diagnostic tests and effective treatments are not offered immediately.
Accepted wisdom states life involves saying goodbye. Friends come; people go. It’s the way of life; you gotta accept it. Solid advice, given with a kind smile. There’s only one thing wrong with that kind of advice: the number of losses resulting from brain injury outstrip the ones from before.
“Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is . . .”Janelle Breese Biagioni, RPC, Brainline.org, 7 March 2013
When they’re as vulnerable as children, people with brain injury say goodbye to:
- Family members. Plural. Each goodbye adds to a mixed bag of confusion, hidden grief, apathy, no affect — yet functioning better without the continual drain of doubt and criticism.
- Friends. Plural. Often all of them. Each lost friend bulges that mixed bag of confusion, grief, relief, and the paradox of feeling good while excruciatingly lonely without the friendship drag of being neglected, criticized for not healing quickly enough, abandoned.
- Lawyers. Sometimes plural, sometimes only one if lucky enough to have hired a good one on the first go-round. I had three. The first goodbye left me worried. How would I find another one? The second goodbye was good riddance. The third goodbye was good in that he had wrapped up all my claims, but after knowing and working with him in our good cop-bad cop team (me: bad cop) for over six years, I missed his calls, our collaboration, our arguments. I found out later that he, too, misses his clients when the inevitable day comes.
- Specialists. Losses of people as numerous as grains of salt brightening french fries. As each reached the end of their expertise, I had to say goodbye as I searched for a new specialist to help me on the next road of my journey. Some were forced to discharge me by the beancounters ruining our health care systems. I missed each one as I walked out their door. The missing was most acute for the ones I had to leave so as to find and use my limited funds to hire other specialists who could help me more. The ones that crushed me were those forced to discharge me or I was forced to quit because the relationship had gone downhill and they had not worked with me to restore it while it was possible. Teamwork begins between specialist and you and/or your support structure if they remain.
- Yourself. Profound and incomprehensible to lose your own self. The source that often leads to family and friendship losses; the genesis of brain injury grief. (See my Psychology Today article “Brain Injury Grief Is Extraordinary Grief.”)
Sometimes, if you improve dramatically, like Job at the end of his story in the Bible, a friend or family member will return.
If they haven’t educated themselves on brain injury, or even if they have but are unprepared to accommodate the ridiculous sudden appearances and disappearances of emotions; the paralysis of brain injury grief; the avoidance of events that bring up bad memory after bad memory while the injured brain still cannot cope with the onslaught on the senses; the roller coaster of abrupt anger and bawling erupting out of PTSD, or an overloaded brain, take your pick; the fatigue that slays plans; the stamina that fails; the confusion and memory dumps — then their old ways of avoiding and socially lying will reappear. They’ll either dump the injured person (without telling them), or the epithets will be coming out like knives at a barbecue.
Reconciliation for you as the injured person can then lead to distancing yourself or risk murdering your self-esteem for the semblance of a social life. A re-loss.
Sometimes you may need to engage in loving detachment in order to regain social relationships with people who refuse to learn about and accommodate brain injury manifestations and daily reality.
Brain injury recovery takes decades. Exhaustion, no more funds, or reaching the end of the specialist’s expertise at that time — or beancounters forcing a discharge — ends that relationship prematurely. And so sometimes returning to that person happens. Taking the client back is a joyous day for specialist and client alike! But year after year of loss after loss will have piled up stones on your heart. It takes awhile to trust as naturally as the first time the you walked in the door because the first time ended in an unwanted goodbye. The fear of re-loss — the questions of, “Is this real? Will this last?” — thread their way into the resumed relationship.
If the resumed relationship keeps helping over the years, slowly, slowly trust and comfort will return.
Effects of Ignored Grief
As each loss magnifies brain injury grief, as each ended relationship is like a new body tossed onto an overflowing mass grave, they sour your optimistic perception of life. Bitterness may creep in, unfortunately, and becomes another issue to deal with.
The specialist disregarding society’s ignorance of brain injury; disregarding the inability for people to accommodate brain injury manifestations, especially when complicated by PTSD and by brain injury grief erupting from its hidden place; and being oblivious to the too-common refrain of broken relationships in the lives of people with brain injury while placing sole responsibility onto the injured person to maintain relationships and thus blame for all the losses, also crushes your hurting soul.
Equating losses after brain injury to the normal losses in a normal life denies this injurious effect. It reflects a lack of listening and cognitive empathy. Advice that sees loss after brain injury as the kind normally experienced adds to the code of silence around expressing our full range of thoughts and emotions over the losses we feel. We clamp our mouths shut.