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Grayson's Journey

Updates from Chico, Santa Clara, Bakersfield and beyond...

Latest journal entry

Posted 2019-12-04T22:20:00Z


Gray has been really cute lately.  He appears to have really settled into our routine and balances his way through the day in general well-spirits.  A few times he has been able to answer correctly questions about his injury which is new and seems to be filing some of his new memories into places he can retrieve much more regularly and consistently.  There is a sense of his new self that he can reflect on and that has taken our orientations to the next phase, his future.

Now, Grayson's future is quite murky for me but after interacting with other TBI folks, what they end up being able to do is dependent on that sense of (injured) self.  When they understand their limitations they can build in structures to help so Grayson being able to vocalize that he had a brain injury and that his memory is the part that will always be impacted is the first step toward him leveraging supports and structures.  He still relies on us entirely and what he would do if he had the chance to self-direct is the basis of the murky future, we really have no idea.  Therapies, classes and meetings are calendared.  The set of supports to investigate has been completed and the list of opportunities is maddeningly short.  There is no middle ground between institutionalizing him and us caring for him 24/7.

During all of this I have been trying to get my own world to settle down into something sustainable.  The chaos can wear you down, especially when the expected end date is what gets carved into someone's wooden box.  I'm not ready to have a conversation about retirement let alone what I want to do leading up to that carved date, but I used to.  Those tentative versions of my own future were in flux of course, but their themes were long held and widely accepted as rational futures.  Looking ahead, there are very few trails cut through the brush or even footprints to follow, the sights and sounds are unfamiliar and troubling and my solution has been to wait it out.  I assume things will change, that I can get some objectivity or guidance but there are very few who have been this way and even those offering guidance soon reveal that their experience is from a book, not from a similar journey so I look inward, try to see my world from some vantage point that may reveal a path or a direction or some destination that I can put myself on.  The slow, tiring, painful micro-steps that sap my energy will at least be toward some hopeful thing, will allow me weeks and months of dedicated slogging and tireless sherpa-ing, will give me peace and calm during rest time and will allow me to find joy and happiness within the darkness that will become the fuel for the next day.  The purpose defines the rewards.   And that all sounds great in theory but in practice is more like herding cats, nailing pudding and knitting fog.

So if you see me running naked through the streets screaming my head off about aliens and banks, you'll know why.

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