Formerly "Neil Stone Updates"

Tuesday, March 17, 2009

Finding Neil

First thing in the morning, just before bed, and at occasional random moments throughout the day we see little glimpses of him--when he "pops" his good arm and neck, in simple conversations when we hear familiar responses, the way he snaps his fingers. When I came in his room this morning he whispered, "thanks for coming." When we say we love him we hear a faint, "love you, too." He's sweetly affectionate now, which he always was outwardly as a little boy--more discreetly as a young adult. When I told him about this blog and that many people, even ones he's never met before are reading about him and praying for him to get better, he said, "Seriously?" Today he asked for his cell phone and was disappointed that it was out of "juice" and couldn't be recharged. Be assured, fixing the phone is the first thing on my agenda tomorrow morning. We'll find a way to help him reconnect, even if he can't read or spell yet.

Neil's long-term memory is pretty sharp. He told his therapist he was from Washington, and moved to Iowa when he was four--all true. He was able to recall his Iowa neighbors even though we haven't lived there for eight and a half years. Short-term memory is a little fuzzier. He continually thinks it's January. Not hard to believe that, since he slept through February. Even though we have told him about his car accident, he insisted to a therapist he was injured while snowboarding.

Neil will sometimes initiate a conversation, and that's when things get tricky. With no voice, little breath control, and an unresponsive face, it can be very difficult to decipher what he's saying without any frame of reference. He very patiently repeats himself over and over again, while we get closer to hear and try to read his barely moving lips. Often, we all just give up.

And then there are the repetitive ticks which can get pretty distracting during the day. Maybe it's the pressure of his therapy, or fatigue from all the work, but he can't seem to get enough of shaking our hands or patting us on the back. Those gestures, combined with his short attention span, can sometimes get us a little discouraged. And we'll miss our Neil.

Then evening rolls around and he starts to mellow out a little. He'll talk to Grandma or a loved one on the phone with appropriate responses to what they say. (Yes, we do have to relay what he is whispering.) He'll carry on a conversation or just listen to music while he gets a back rub from Mom or Dad. And we'll miss our Neil some more. We love him so much. We know he's in there. How much of him we will get back remains to be seen.


Meredith said...

While he seems soooo far away all we see from this distance how much more and more of Neil you DO have. Occasionally I go back and read archived posts and it is truly amazing how far he has come and how much he is back. I am sure it is so discouraging but keep at it. We see the fruits of his labors and your patience. Love you!!


Luke said...

dont worry the same thing happened to two people i know one who had the exact same treatment and even wound up in the kessler institute
both are now fine
neil is one of the strongest people i have ever met and even though he is still not fuly himself when i was there i could see neil just waiting to break free this entire experiance will only make neil stronger he is ready to come back
and we are ready to see him again