Home OP-ED Time for Us to Hit the Road Again

Time for Us to Hit the Road Again

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[img]2624|right|Diane||no_popup[/img]Three and a half months after Diane was diagnosed with Lou Gehrig’s steadily degenerative disease, amyotrophic lateral sclerosis, we are going on the road again in search of…some relief.

Last month it was Boston – and potential clinical trials, which did not work out.

Next it will be a preliminary trip to San Francisco, in 2½ weeks, to try again to qualify for longshot clinical trials that, hopefully, will buy time for us.

The experimental trials, realists tell us, almost are like trying to trap smoke in the palm of one hand. Or touching, feeling, a cloud as you fly by.

My desperate mission is to buy time – days, weeks, months – more time for a panacea to be discovered that will arrest this full-bodied ugliness.

She used to be the briskest walker in our neighborhood, not long ago.

Yesterday, with the aid of our 8-year-old grandson, you might have downed a hearty meal in the time it took us to shlep the modest distance from the car to our booth in a restaurant.

It is painful to watch Diane stand up, from the couch, the car, the bed.

The only time she travels at a normal pace is when she rides our new stairway seat from the living room to the upper floor,

Not everything about our lives is upside down, though.

When we met, Diane eagerly, confidently explained how she was accustomed to taking significant portions of each meal from the plates of others.

Never have I understood persons who stretch across a table, stab their silverware into another’s plate while justifying their interference with the flabby sounding, “I just wanted to see what your pancakes – steak – salad – vegetables – tasted like.”

Really?

Did you see a sign out front that boasted “Our food tastes different from everyone else’s on earth”?

Then why are you touching my plate.

It took six months of sometimes testy courting for Diane to realize I was serious when I said the food on this plate is mine, not yours, not my brother’s, not the waitress’s.

Our grandson Gabriel almost had to stand in the booth to see above the heap of luscious food he had been served.

He didn’t mind at all when Bubbe reached across the expanse to taste his pancakes, and repeat the act to be certain her taste buds had not betrayed her – and the same with fast fast-disappearing potatoes.

The New Diane is what we see but the Old Diane, deep inside, is ALS-proof, and doing well.