“If this old world starts gettin’ you down, there’s room enough for two, up on the roof…” James Taylor, Up On the Roof, Flag album
I am driving along with Owen, toward Saturday errands. It is a grey January morning after our gym workouts. I feel good, but Owen has been down. His inability to control body movements has been greater, and his sense of being dead-ended. James Taylor’s version of the iconic Motown song moves me – I hear in those words everything I want to say to Owen about perspective – that how you look changes what you see – and how you see what “is.” I sing along, and glance at his profile.
Christmas was nice, in spite of sickness, in spite of the absence of some family members. (Owen told his sister Freya more than once that if she didn’t come home, she wasn’t getting a present. She ignored the threat and got her present anyway.) Our love connected us, despite distance of all kinds. Some love was transported by voices enabled by modern technology. Some required other kinds of energy. I found myself thinking frequently of my dad and my mom, and my brother Keith, each of whom left this world near Christmastime. A little more emotion in an already highly charged season.
I THINK YOU ARE GETTING TOO MANIC Owen spelled out to me, sometime in early December. I THINK YOU SHOULD TAKE MORE MEDICINE.
I felt a tad resentful at this. A bit…rebellious. Judged unfairly. Still, I increased my small dose of Lamotrigine (with the blessing of my psychiatrist), and split it into two parts, the first one earlier in the day. Not earth-shaking, but no ill effects; it has been a good idea. Owen has insights. It is true that “He is not,” as his sister Bronwyn pointed out once (resentfully?), “an oracle.” Not an oracle, but an intuitive. Perhaps with so many abilities compromised, others are more greatly developed? But intuitives can still be blind; no human way of seeing is whole. We need many perspectives.
The holiday viruses that captured us, and held us hostage, missing special people and events, also had their perks. On Christmas morning I dozed on the couch through our family worship readings, and woke surrounded by music. Unable to sing, Owen and I both listened silently (he chopping) in the middle of the cloud of music. Even without our family alto and some of our tenor voices, beautiful harmony filled the room. Because I know to look for it, I saw/felt Owen’s body still and listening. This is Owen’s always world, I thought. Listening, surrounded by sound. Good? or bad? This fall Owen started piano lessons. Now we know how much he loves music, and I will make sure his new year includes concerts. Somehow we will figure it out.
But first we must forge our way through the after-holidays. Now the mornings seem darker. Now the chopped hot water bottle, the stolen, crushed and emptied husks of my cleaning products, proclaim Owen’s inner turmoil. An afternoon wandering a park with his aide only seems to have intensified this state of mind; he cannot type or spell coherently that evening. Next morning he is able to tell me — he is angry. He is frustrated. His hand punches the letter card. His younger brother Oskar gets to leave. Oskar gets to go to college. Owen is trapped.
Do you think that it is fair for you to damage my stuff because you are angry and don’t like your life? I ask him, striving for emotion-neutral tones.
NO I WISH THERE WAS ANOTHER WAY I COULD EXPRESS MYSELF Owen tells me.
Owen seemed to feel calmer after this. His typing hand was not so punchy.
Let’s think of a way I say, sitting down beside the tub, tablet and pen in hand. I begin to scribble ideas, ways Owen could turn that frustration into art… Slowly, the schedule for Owen’s winter studies is taking shape.
Once you couldn’t tell me, Owen. Now you can. You may feel darkness now now, but I hope you will return to a new view of it, the incredible if imperfect gift of speaking by assisted spelling. To you. To us. To the world, reading your words. The remarkable journey that you are on.
Some readers, following this blog, reading our words, may also struggle to see what I see, may have doubts that what we write could be true. Could a person who rushes about grabbing, chopping or biting plastic really have an active intellect? Could such a one be alive inside, intelligent but retreated? disconnected from the insanity of his own body movements, unable to stop himself? Could a person seeming so out of it have intuition or extra-sensory perceptions of other kinds? and can such a one be called forth by focused support, learn to connect his brain and body? As the stroke victim recovers ability in a frozen body part, via purposeful therapy, so Owen is slowly learning to direct his fingers and hands. We have various methods to deploy: reflex integration therapy (MNRI), music/drumming, piano lessons, swimming. But all of it starts with supported movement.
Thank God for its inventors – intrepid Rosemary Crossley in Australia, inspired by a twinkle in the eye of a young woman with cerebral palsy. Soma Mukhopadhyay, who kept on nudging her son’s arm because this enabled his hand to move, and his poetry poured forth.
A new year has begun. Take a fresh look. Come on up on the roof.
“Everything is alright, everything is alright…” James Taylor, Up On the Roof
Owen is laughing in the tub as I read him this last blog draft, asking for his edits. Do you feel better when you type out your anger or frustrations? I ask. YES I DO he spells. His mouth says A witch. A tinman. A tinman. A tinman. Should I use the paraphrasing or your own words in the middle? I ask. USE THE PARAF (he stops spelling. I think it’s a PH, I say.) PHRASING YOU DID A GOOD JOB.
I feel so thrilled for Owen and your family that you have found a way for him to communicate and share his inner self with you and the world. Thank you both for sharing this journey of opening communication and wonders of discovery.