One of Carol’s last traveling adventures was to sail on a 36-foot boat across the Pacific. This is the basis for her memoir, Right Now Is Perfect: A Romance, An Adventure, The Unexpected Thereafter, published in 2010. It concludes with the unexpected diagnosis of primary-progressive multiple sclerosis, and the impact of progressing disability. The story is described as, “An imperfect romance on a crowded sailboat unfolds as the four-person crew sails among the beautiful, isolated islands of the South Pacific. French Polynesia, the Cook Islands, American Samoa, Samoa, Fiji and New Zealand are the landfalls you’ll discover along the way.”
Carol explains, “I was diagnosed in 1998 at age 50 with primary-progressive MS. It has affected my left side primarily and I can no longer stand nor use my left hand. One of the main advantages of writing and marketing a book has been to be a part of the writing community. With my mobility problems, it is hard not to become isolated. Attending book signings and writing groups is very stimulating. Talking about sailing allows me to forget for the moment my current situation.”
“Frank retired after he was diagnosed with secondary-progressive MS. He later volunteered as a high school coach, and through his sports writing for the local newspaper, was able to make a difference for the students and prevent some of the sports programs from cancelation. Frank has written and published Raven Wings and 13 More Twisted Tales (2010) and Star Child and 13 More Twisted Tales (2012), short story collections written expressly for adults and not for children. In the abstract from his second book, Frank’s writing is described as, “Rich with dark humor, his tales examine our relationships, society, religion, and even politics with alternative histories and flat-out science fiction.”
Frank states, “After a severe relapse in 1997, I battled back, regaining vision in one eye and walking with the help of a cane. I intend to bring attention to the disease and have pledged a portion of my book royalties to MS charities. I remain positive. Although I no longer coach, I share free information with students on poetry and creative writing, while encouraging them to become politically active.”
“I had been teaching high school English for about four years when I started having problems,” Josh explains. “After a rather sudden loss of feeling, followed by Lhermitte’s sign [a lightening-like sensation down the back when the neck is flexed], a clear diagnosis was made. I have used my abilities with written language to act as a vent when needed. While I cannot draw much (picture a kid who almost failed art class), I find an adequate outlet in the written word. I do not limit my writings to MS; I wrote all through college and I now compose poems for my wife and daughter. Given the symptoms of MS, I have had to take on rather less active diversions, and I find solace and some consolation in my writing.”
Josh finds comfort in writing poetry about his MS. His ongoing work, My Affair with MS, is “a sonnet cycle of my dealings so far with MS that hopefully will finish with an end to the disease.” He writes prose about his experiences with MS – including symptoms, treatments, concerns, and hope for the future.