[ME & THE BOOK OF JOB | Jonathan Strum ]
her bike 40 miles every morning to completely losing the use of her arms and legs. It was at that point in the progression of her disease that I decided to stop working and stay home to care for her.
My life went through its own set of changes as I transitioned from days spent as a dot com entrepreneur and marketing consultant with clients on 3 continents to a full-time caregiver, administering a wide range of medications throughout the day and night, feeding Jeanne, attending to her every need, and making and managing what seemed like an endless number of appointments with neurologists and other medical specialists (6 separate two-week trips to the Cleveland Clinic for a series of 3 brain surgeries? No problem.). It turned out that my toughest job, though, was trying to keep Jeanne from sinking further into the clinical depression that so many MS patients face. This was also my most important job, as a patient's outlook is so closely connected to their ability to successfully cope with the many physical and emotional changes that MS can cause.
Jeanne went from riding her bike 40 miles every morninng to completely losing the use of her arms and legs
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In the span of a decade, Jeanne's condition worsened as her symptoms multiplied. Several other aspects of our lives also began to change. To begin with, Jeanne needed more and more care. By 2003, she was bed-bound, the severe contractions in her legs preventing her from even making even occasional use of the wheelchair which sat, unused, in a corner in our house, until it was donated to others who could actually benefit from it.
Jeanne suffered cognitive decline and developed severe swallowing issues which forced us to transition her nutritional regimen from solid foods to soft foods to milk shakes fortified with nutritional supplements. And when she could no longer manage to swallow even her favorite vanilla milk shake, Jeanne received a g-tube (feeding tube) through which all future nutrition would be given. At this point, the rhetorical questions, 'Why Jeanne? Why Us?' were already invading my consciousness.
Our heretofore happy-go-lucky lives were suddenly being defined by loss. We could no longer travel, go to the mall, take in a movie, enjoy a meal at a restaurant, or visit friends at their home. And the ranks of our "friends" thinned dramatically, as people, finding Jeanne's situation just too sad and even a little scary, stopped coming to visit. Jeanne's parents, comfortably retired in nearby Arizona, advised me that, “Seeing Jeanne in her condition was just too depressing,” and so they, too, chose not to visit their daughter.