We searched the internet for information on what we could expect and we did find some of the more noticeable changes chronicled by families in the form of inspirational videos, probably made hoping to fill the same gap I now feel the need to fill. Those major changes, coma to awakening, wheelchair bound to ambulatory, silent to speaking all showed us that there was life beyond the stillness that defined her at that time. We got our answers and they were as different as the people who were injured but we learned and lived enough to move into acceptance mode. Here in that mode though again I find myself curious, though far less desperate, for how much others have progressed and how quickly they did so. The results have less mass appeal but to those of us still in the trenches every day, the improvement holds significance in a completely different way. The considerable strides Juliana made in the first two years inspired thousands both near and far, but the consistent pursuing of improvement is what makes an impression on those of us living alongside her day by day.
- Every single morning waking up includes getting a little bit better at sitting up in bed (snuggling our adorable Magic helps), holding the railing with more strength in her right hand and sitting down in the bathroom with improved control.
- Every single meal includes more precision feeding herself and drinking with a steadier hand. Every walk down the stairs requires less instruction from us on where to place her feet or which rung to grab.
- Every day on the computer includes better hand eye coordination with the mouse and keyboard. Every message she types on Facebook has fewer repeated keys and typos (which she hates because she is an excellent speller).
- Every conversation she has either verbally or written is more full of personality, wit, intelligence, consideration and maturity. (If only we could throw articulation in that list...grrrr....nevermind...wrong blog, wrong blog).
Those are the changes that I could not have predicted would need to come back by the dropful when we were unsure when she would wake up. I couldn't have appreciated the minuscule perfection in technique that would highlight our future when I was simply waiting to know if she would even remember us. But I see that every single thing she does from swallowing to thinking to creating a work of art has to be done with incredible effort in order to fit back into her life. And even though there were many times we couldn't be sure an activity would get better, the work that is required every single minute of every single activity of every single day is paying off.
So if you are caring for someone with a TBI and are living in the dreaded ‘plateau’ with your loved one, you may not find an inspirational video that documents the subtleties of finally having dinner without them spilling their soup and wonder ‘when’ that will improve. (Well don’t expect me to video tape that one either) But you at least have my word on it: In spite of what the experts say, if effort continues, changes will take place. I can’t speak for anyone else out there but as a mom who watches my daughter try over and over each day until slowly…painfully slow, she is knocking another obstacle out of her way. And although I am impatient by nature, I recognize that what is worth having is worth waiting for. 'Slow' is not my favorite speed but its still forward motion.
I am sure that most of these details are not rays of hope for the masses because thankfully sitting down for breakfast is not a series of skills your brain had to relearn. But for those of you who stop searching for answers because the monotony of what improves in the later years of TBI recovery is far too subtle to make the morning news, I hope you continue to work toward recovery. The Juliana of today is clearly much better off than the comatose girl in 2009 but even as I trembled in the dark monitored room back then, I expected nothing less. I may not have expected the road to be this long (and certainly not this permanent) but if I did expect that, I certainly would not have expected Juliana to work as hard as she does for as long as she has been working. And in spite of it all, everything she has achieved, Juliana is still not at all impressed with the strides she is making, the impact she has on people, or the art she creates. She enjoys the accolades but remains her own biggest critic. I can’t expect her to grasp the magnitude of how far she has come but I stand in awe of her and her time served. I still want to know what is going to happen and when it will occur but…sigh…I get it…What will happen When it does and looking back we will have our answers. I guess I will go back to the generic answer that works better than any other: Anything is possible …at any time.