[img]2553|right|Diane||no_popup[/img]Diane and I ask for your prayers and support for our four-day trip to Boston, which begins before dawn tomorrow.
Nervous. Scared. Excited. Those are the wings we will be clinging to when we depart LAX.
We have a Wednesday evening appointment at Massachusetts General Hospital to determine Diane’s eligibility for a clinical trial in late summer when stem cells will be transplanted in ALS patients.
Our journey starts 63 days after a neurologist, with the casualness of a teenage soda jerk leaning across the counter, said three life-changing words to Diane, like three plunges of a giant butcher knife, “You’ve got it.” He meant amyotrophic lateral sclerosis, ALS, a progressively degenerative motor neuron disease that withers the limbs and soon enough paralyzes, freezes, what remains.
My once brisk-walking bride used to urge those accompanying her to keep pace with her. Now she uses a cane and a walker interchangeably.
When she came onto the grounds of our grandson’s school last Thursday, from a distance she resembled a ghost, she was so frail. Because of the increasing tenderness of her body, her movements are ginger.
ALS is incurable.
Patients and their families are left to desperately grasp for experiments you learn about. Qualify and perhaps you are buying time, additional weeks, months, years if you are lucky, in the hope that researchers will make a miraculous discovery in the interim.
For the past two months especially, weekends at home have been grim. We look at each other and both faces get wet. Almost in unison, we head for the garage and our car, to go someplace, anyplace, as long as we are not sitting on the couch wondering. Fearing.
We will take an outing as uncomplicated as driving to a park, 30 minutes from home. Ostensibly, we are there to read in surroundings distractingly different from home.
We never leave the car. Park benches and picnic tables are too uncomfortable.
Still, exposure to a fresh environment – children romping, teenagers cavorting, parents schmoozing – cash in the value of our modest respite. For one more distraction, we stop at a longtime favorite pizza store for dinner.
Happily, two dozen diners are chattering. They have no idea how much we appreciate their laughter.
Relief for a moment.
Soon enough, it evaporates.
