May 8, 2003
Dear Friends and Family;
Noah and I are settled and becoming as comfortable with the big city as two country boys can. We are in awe of Chicago’s downtown. Our apartment is on the 21st floor of a 40-story high rise. The view is south to the Field Museum of Natural History and Soldier Field. The Chicago River is straight down and Lake Michigan and Lakeshore Drive are 1/10 of a mile in one direction and the magnificent mile of Michigan Avenue is 1/10 of a mile in the opposite direction. Our building for all its size is modest in this neighborhood. In all directions we look up at 60 and 70 or more story buildings. The Chicago we are seeing is beautiful, clean and vibrant.
The Rehabilitation Institute of Chicago is a short 10-minute walk. We are fortunate to be so well located. Spendy? Perhaps, but the proximity to our needs is making this adventure fun rather than a daily battle of deadlines and logistics.
Life in a wheelchair is challenging enough. Because we have short manageable journeys to take care of our daily business the longer outings to have fun are anticipated rather than dreaded. Nonetheless, everywhere we go, obstacles exist for wheelchair users. Steep curb cuts, seized concrete on the sidewalks, even gradual slopes, if they are long, make wheeling about difficult.
Noah suggested early on that being in a wheelchair is like walking on your hands. You travel through everyone’s refuse, the grease and oil, food spills, expectorations or whatever. If it rains your hands are wet and cold, your pants are soaked with wheel spray, and forget about protection from an umbrella.
Your hands are in it all day long. You soon become a part of everyone else. How do you adapt to the permanence of this change? How do you transcend the indignities?
The rehab institute is like the Land of Oz. It glitters but the façade is soon left behind for the hard work and the harder stories inside. Noah and I are similar to Dorothy and her companions. We want an audience with the Wizard. As with the storybook characters, I suspect it is ourselves we will discover and not his eminence.
The RIC is full of tough stuff, bad things happening to good people. We are more of the same. The spinal injuries are among the worst. Everyday I witness the procession of those seeking a way out of their wheelchairs. Gang bangers defiantly attempt to swagger in their chairs. Usually a small retinue of peers, proud and sullen, accompanies them. Then there are the chronic wheelers in evidence by their skills; self-reliant and business like, on their own making do with a grim situation. They hop and spin, maneuvering along the slick flooring with confidence. Then there are the recently injured, such as Noah, tentative and self-conscious.
I survey the other patients trudging through the mire of their grief, clinging to fragile tendrils of miracles. The moms daily rebuild their eyes with make-up to conceal the damage of worry, regret, and fatigue. The dads, if here at all, are stoic but slump shouldered from the burden of denial. I observe and wonder what haunting visage I project when the veil of my smile falls.
Still, hope and optimism do exist. The staff exudes a convincing positivity. The incredible, the improbable, and yes, the miraculous have been witnessed by many. Signs everywhere proclaim the status of RIC as having been recognized as the best rehab hospital in America.
I am excited. Noah is subdued. Is it realistic to believe he will walk out of here? No, it doesn’t work like that. I am trying to remain practical. I will be pleased if the therapy increases Noah’s overall strength. I want for us to learn from this experience exactly what neurological return is present. Some of it must be hidden by his weakness.
Noah, of course, has greater expectations. Will he walk again? No one knows but this is definitely a place to begin to find out. He is subdued because of what is at stake. He can only participate in the study, he cannot control his own neurological destiny. He must rely on the genius of others, the compassion, the empathy, the passion for intellectual pursuits that motivates researchers.
Friday, May 2nd, Noah was assessed and accepted into the trial. He actually got into the Lokomat robot for a fitting. Then, he literally rolled dice to determine the group in which he would participate in the clinical trial. Up came a number six and he was placed in the robotic group.
Monday, he had his first of 24 sessions. After much adjustment and some starts and stops, he walked continuously for 21 minutes. He was comfortable during this workout, broke a sweat, and felt good afterwards. The machine transformed Noah’s and my skepticism and worry. We are believers and born again optimists. The machine is for real.
The entire journey thus far was worth the blossoming of Noah’s smile once the researchers got him in sync with the machine. When finally they told him to let go of the parallel bars and his arms started swinging in opposition to his legs, it looked as if he could have walked all the way back to Oregon. Such is the sad sack desperation of my hope I become giddy with hype…
The second session on Wednesday, Noah walked for 23 minutes. The experience was not quite as euphoric. The spastic responses in his legs hinder activity. The researchers, David Zemon and George Hornby, are finding Noah to be a challenge. This depresses Noah. However, I am optimistic they will work it out. Research is full of obstacles and I believe their creativity will prevail.
Brother Isaac arrives today. He will care for Noah for 2 1/2 weeks. I am excited enough that I do not want to leave. However, Noah needs a break from his parents as much as we do from the care giving. He is looking forward to his brother’s company. Ike doesn’t know it yet, but this will be the most difficult thing he has done in his life. He will do fine.
The machine is wonderful but Noah’s recovery is still going to be about the hard work of conventional therapy. He has a complete schedule of therapies outside of the trial. He will be busy. Thus far, things have gone well in Chicago. I am leaving reluctantly and already look forward to my return.
John
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