I had the pleasure today of spending some time with a young guy who has a strange problem. His top lip doesn't move, can't wiggle his eyebrows, can't really close his eyes completely. He has to use his fingers to press on his lip to be able to drink something, or not spill food from his mouth, or say "p" or "b" sounds over the telephone. It came out of no where.
Now this is someone who has something to be upset about. Yet, he continuously said things like "I'm kind of proud of myself for figuring out how to do things [things = eat, talk on the phone]on my own" and "I think this is going to get better -- I just have work around it for now. It used to be annoying but I've moved past it". And I believe him. He made jokes -- self-deprecating, caustic, sweet jokes. He praised his family for being good to him. He offered to send me coupons for being nice to him. He talked about meeting people in a hospital who frustrated him because they wanted to get better immediately and gave up when they couldn't do things exactly the way they did before. He thought he'd be a good counselor to them.
So my question, posed to him and to you, is what is it in someone that fosters this spirit of optimism and desire to just see life go on no matter what version of life it is?
Often when the brain is injured, it protects the person's spirit (in my opinion) by not really giving the whole picture of how bad off they've got it. But over the years I've met so many people who are in comparable boats -- same age, same diagnosis, same socioeconomic status--and half of them are enjoying what they can on the cruise and others are watching the boat fill up with water from a hole they could plug with their thumbs if they had the energy to do so. It doesn't appear to be an issue of faith -- sometimes the very faithful are the most difficult as they feel that whatever will be will be, that God will provide so they shouldn't have to. It doesn't appear to be an issue of depression -- I've seen some very depressed people persevere. It doesn't seem to be an issue of motivation -- everyone has something they want back that is worth fighting for. I'm starting to think it's an issue of love -- those who truly feel loved when they are injured and continue to feel loved as they work to recover have a different purpose about them.
When I was a very new to people with brain injuries, I covered a patient who, because of his brain injury, had so much tone through his body that his feet were literally stretched flat when he was in bed like pointy extensions of his leg. Half of his skull had been removed, which is really weird to see as it looks like a big dent. He couldn't move much of anything on purpose, he couldn't talk, he had a gurgly tracheostomy tube, he was always sweaty. It was a little scary for me to see him, and I'd seen people in a similar condition before.
Before his injury, he had been a young, robust guy engaged to be married, and his fiance was with him everyday in rehab. The treatment that I was sent in to do involved trying to get him to purposefully move his tongue when presented with a touch or flavor to his lip -- I did it with a cherry heart-shaped lollipop his fiance kept in a drawer for such practice. I did the stimulation for 20 minutes with no result. In the last shot at it, he moved his tongue forward just to his teeth. It was a small victory, but a victory. His fiance saw it, and as I was leaving she walked over to the bed where I had been standing, leaned forward, and kissed him square on the lips. Just like she would have kissed him on their first date. I was truly moved that she clearly saw the man she knew and loved in this body that looked so very different from the photos on the bulletin board. That she had loved him and did love him still -- not just tolerate him or stay committed to a promise, but love him. His recovery is still ongoing all of these years later, but he walks, and talks, and lives with this woman.
I'm thinking there has got to be something to this -- that when the people around you see your soul no matter what's going on on the outside, that love has the power to grieve for things lost but also to celebrate the things left over. The wife of a man who was severely disabled and forever changed looked back on the last year or so of their life post-injury and said, "I wouldn't wish this on someone, but as weird as it sounds, it's been kind of fun."
Gives the old adage a new meaning, I think.
The painting is Samson and Delilah from Peter Paul Rubens in 1609 -- an extreme case of love being blind