January 17, 2003
Dear Friends and Family;
Noah’s week has been a mix of small successes interrupted by setbacks. His therapies went well but Friday evening his girlfriend, Andrea, broke up with him. This was not what Noah wanted.
Fortunately, his good friends, Colleen and Kate arrived to ease the fall. I wish I could have taken him out for a drink or two. His nurse, Chip, did give him a valium (ostensibly for spasms) in addition to his evening sedative. We talked until his eyes drooped.
Don’t anyone be hard on his girl friend. We’ve all broken someone’s heart. This is just such tough stuff, a lot to handle. All is forgiven in every direction on every issue. There is no pattern to follow in this situation. And yet, why all the bad luck on top of bad luck? Is it mine? Is it Noah’s? Is life so arbitrary in its dispensation of pain to someone so full of goodness? I am shamed by how sheltered my life seems and want to scream at someone, anyone, “Leave my son alone!”
Saturday we went over a lot of things the hard way. He wonders, “What if the tire had finished…?” We sob uncontrollably in the Portland rain outside, free of the confining filtered air of the wards, the hovering nurses, and the other patients with their own tragedies. Still, Noah manages some therapy and an outing to Music Millennium. Afterwards, we shared a meal at a Vietnamese restaurant ironically named Miso Happy.
Sunday, his good friend and Drama professor, John, arrived. John and I accompanied Noah to his morning therapy. Being there with him you fully understand the reality of his situation. Together we watched for 90 minutes as Noah went through his drills.
This is elementary school for movement. The first session with a physical therapist consisted of passive stretching and then laying on his back and practicing rolling from one side to another. I can only imagine it is like trying to lick your lips with a mouth full of Novocain.
Following these rudimentary maneuvers, he worked with an occupational therapist. Her job was to teach Noah how to transfer from his wheelchair to a bath seat in order to shower. Of course, his balance point eludes him whenever his back is unsupported. He and the therapist wrestled uncomfortably in order to just move laterally three feet and lift his unresponsive legs over the edge of the tub. This is excruciating therapy for a father to observe in his full-grown previously able-bodied son. The OT was heaving with exhaustion. Noah was bewildered and discouraged with the alien body he now inhabited. And I, for the first time, feared the prospect of being his caregiver.
Monday he is listless and diagnosed with a urinary tract infection. This is a common complication in spinal patients. Fever, chills, and leg spasms that progress throughout the week accompany it. When I arrive Thursday for the family conference, the spasms are strong and unpredictable. He is like an ornery mule kicking passersby that veer too close. He says he can feel them all the way up into his diaphragm. The spasms also occur now in his arms when he tries to wheel himself about. This should subside with the infection but it feels to Noah like he is going backwards in spite of his efforts.
He and I and the recreational therapist take a bus downtown. This is a dry run for a Portland Trailblazer game we are attending Saturday night. I learn a lot but Noah seems bummed by the attention and the vulnerability. I feel the adventure of it, the new skills attained, the arcane rituals of public transportation. Noah does not complain but he is subdued. This Everest he must climb moment to moment is relentless. I realize my fortunes are tied to his and that elusive “good day” I spoke of last week will not be mine until it can be ours.
After the conference, which was uninformative in a blandly positive way, there was more therapy to endure. This time it was a car transfer. Everywhere they go, spinal patients are square pegs trying to get into round holes. Actually, Noah went into the car well but it took three of us to get him out. Furthermore, two of them knew what they were doing! The transfer was not good and evidence of frustration was on Noah’s face. Yet this is how you learn. We all expect it to improve with practice. It is just that the lessons are so full of the immutable reality of paralysis that the patient dreads the next session.
Again, good fortune appeared in the person of our family friend, Eric Voight, a chiropractic neurologist. He was waiting for Noah in the gym when he returned from the parking lot. Eric is reassuring about the neurological function that Noah has and encourages him to work through the difficulties.
The therapists can show him how to do things with what is presenting itself. Eric’s perspective is to increase recovery of function. Noah needed this reminder to believe and hope, even if only to help him go on from day to day and get through the arduous toil of the acute stages of rehab. Thank you Eric, your timing was impeccable. Also, thank you to Colleen and Kate who seem to arrive at Noah’s worst moments. They came by and took Noah out for dinner, a pair of mischievous angels spiriting him away with much giggling. They snuck him by the nurse’s station and went off into the evening. This is the first time outside without Mom or Dad since the accident.
There is a big weekend ahead: acupuncture and basketball on Saturday. Sunday is wheelchair rugby.
John
