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Brain Injury Leads to Innumerable Losses

Are the kind of losses experienced after brain injury part of normal life?

Shireen Jeejeebhoy
Source: Shireen Jeejeebhoy

My neurodoc once told me that 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 was only one thing wrong with it: the number of losses I’ve had since my brain injury outstrip the ones I had before.

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.
  • Health care professionals. 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 professional 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 professionals 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 professional and patient.
  • Themself. Profound and incomprehensible. The source that often leads to family and friendship losses; the genesis of brain injury grief. (See my post "Brain Injury Grief Is Extraordinary Grief.")

Sometimes, if the person improves dramatically, like Job at the end of his story in the Bible, a friend or family member will return.

Reconcilation is a happy dance — until they realize the injured person is still not who they were pre-injury and probably never will be again.

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 the injured person can then lead to distancing themself or risk murdering their self-esteem for the semblance of a social life. A re-loss.

Brain injury recovery takes decades. And so sometimes returning to a health care professional happens. Exhaustion, no more funds, or reaching the end of the health care professional's expertise at that time — or beancounters forcing a discharge — had ended the relationship. Recovery taking the client back is a joyous day, for professional and client alike! But year after year of loss after loss will have piled up stones on the client's heart. It takes awhile to trust as naturally as the first time the client 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.

As each loss magnifies brain injury grief, as each ended relationship is like a new body tossed onto an overflowing mass grave, they sour the injured person's optimistic perception of life.

The professional disregarding society’s ignorance of brain injury; disregarding the inability for people to accommodate the exigencies of brain injury, 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 all the losses, also crushes their client's hurting soul. Equating losses after brain injury to the normal losses in a normal life denies this injurious effect. My neurodoc’s solid advice shut me up. But for years before the code of silence around expressing our full range of thoughts and emotions over the loss we feel as patients and clients and as health care professionals and lawyers of long-term clients, when our relationships end, had kept my mouth clamped.

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Copyright ©2018 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.

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