Talk is Cheap

 
Six years ago—November 3rd, 2012 to be exact—my daughter, Lauren, two months shy of 24, awoke finding herself numb from the neck down. Her limbs were not paralyzed; indeed, the decreased sensitivity in her torso competed paradoxically with pulses of current shooting down her arms and legs.

Lauren, a first-term nursing student, reported promptly, as always, for her scheduled training shift at Melrose Wakefield Hospital. She told the instructor of her sudden onset of odd symptoms, and was promptly dispatched to the ER under suspicion of an acute neurological episode. From there Lauren was advised to go to Mass General Hospital for an MRI, given that MWH didn’t do MRIs on Sundays. Neither that night did the backed-up MGH. It was after midnight when Lauren entered the foreboding capsule.

Foreboding it was. The oracle spoke ominously of the fate that awaited my daughter—its dire findings being conveyed to her at two in the morning by four masked men who gathered round her bed. Lauren, having just dozed off, was thus disoriented when the white-clad alien quartet approached to inform her of four lesions found on her spinal cord. You have Multiple Sclerosis, they intoned before vanishing into the night.

Lauren’s boyfriend was with her throughout the drawn out drama. She had no need for another player in the MGH waiting game, so I spent my own restless night at home, awaiting her call. She thoughtfully waited until 8 am, Monday, November 5th, to give me the news.

November and December dumped upon us an overwhelming offering of underwhelming options of pills and injections, all with nasty side effects. Lauren was invited to enroll in a double-blind clinical trial comparing standard and experimental treatments. Meaning, she would suffer thrice-weekly self-administered injections of what likely as not would be simply saline. If the coin-toss awarded her the real deal on that score, then the obligatory monthly infusions would consist of glucose in solution.

After six weeks spent swimming in a sea of indecision, Lauren reluctantly opted to self-inject—Mondays, Wednesdays, Fridays—the drug REBIF. She endured four months of “REBIFlu” before putting herself out of her achy misery. Lauren was loath to try another drug; she decided to risk the likely progression of MS. A not unreasonable gamble considering the certainty of otherwise feeling so sick every day.

Lauren—midway through the fall semester when MS struck—was able to complete the term thanks to the ingenuity of her teachers. In lieu of the clinical immersion required of a nurse-in-training, Lauren’s assignment was to write a paper describing her experience at the receiving end. Afterwards, Lauren took a leave from school, during which time—despite persistent MS symptoms competing with ongoing bouts of “REBIFlu” —she continued her full-time day job.

In June, Lauren, beyond depleted, decided to quit both REBIF and her job in order to resume nursing school. Amazingly, she managed to complete the three remaining terms, graduating in December, 2014, two years after MS first attempted to cut her down.

Fast-forward four years. The merciless MS—having pummeled Lauren persistently throughout—delivered, on Tuesday, a knock-out punch. Actually, it was the doctor who delivered it. Namely, the devastating news that, despite Lauren’s having gamely returned its blow for blow these past four years, the sneaky MSOB had wreaked havoc upon her. The latest MRI showed such extensive proliferation of spinal cord lesions that they couldn’t be counted, their boundaries having blurred one into the other.

Flash back four years. As before, Lauren faces five days of IV steroid infusions to quench the latest crop of lesions afire. After which their charred remains will persist as scars, joining their many fellow burn-outs. As I write—and as the steroids fight—incipient lesions threaten to erupt. For which the only hope of prevention is the same assortment of dreadful drugs, plus a few (modestly-more-effective?) others of their ill-tolerated ilk.

Surely, any mother would gladly trade places with her stricken child, would sacrifice herself in a second to spare her daughter from suffering so.  Whence stems the universal parental wail: I beseech thee, dear Lord —take me instead.

But it doesn’t work that way, sad to say. So, so, sad indeed, would any decent mother say.

Which I am not, God forgive me. Rather: don’t. I deserve to be despised. Because deep down—actually, not so very deep at all: I can clearly see my cowardice reflected in the shallows —I am relieved, so, so relieved, that it doesn’t work that way.