5 minute read
Feeding Her Body with HPN, Feeding Her Soul with Music
Feeding Her Body with HPN, Feeding Her Soul with Music
Donald S. Neblock
MaryAnn Neblock, my wife, loves to sing and has a great alto voice that brings the songs in her heart to life. She also has almost no gut left because of nine major surgeries to remove intestine irreversibly damaged by a lifetime of Crohn’s disease. MaryAnn relies on intravenous (IV) home parenteral nutrition (HPN) seven nights a week to sustain her life, maintain her health and enable her to live a full, rewarding life. MaryAnn is in her seventeenth consecutive year of HPN.
MaryAnn performing with LakePoint Duo in October 2022.
Photo by David Hutchison
Battling Crohn’s
In her youth, MaryAnn studied and performed music, playing Hammond organ, and singing in school choir and vocal ensembles. In her early twenties, she had a great time singing in a wedding band with me (her then boyfriend), Donald, and two friends. In fact, her (and my) love of performing music was so strong that we played for an hour at our own wedding reception in 1976!
But, by her early twenties, Crohn’s disease was already starting to attack MaryAnn’s intestines, starting a lifetime battle with the disease. Over the decades that followed, none of the medical therapeutics tried were successful in containing the disease’s onslaught. In 1999, her first major abdominal surgery was undertaken to remove irreversibly damaged regions of small bowel. After undergoing eight more surgeries, with her last one in 2018, MaryAnn was left with only about 80 centimeters of remaining small intestine, no colon, an ostomy, and profound short bowel syndrome (SBS) requiring nightly HPN.
Mercifully, MaryAnn’s current biologics therapy has kept her Crohn’s at bay since she started the medicine in 2016 and has preserved her remaining intestine, little as it is. MaryAnn has been on HPN support since 2006, infusing her complete nutritional requirements over twelve hours, seven nights a week, through a verywell-cared-for central venous access device —her central line.
Ongoing medical care and numerous hospitalizations over the decades of her fierce battle with Crohn’s disease occupied MaryAnn’s energy and efforts full time, as, in addition, she raised our two children (both now adults) and maintained our family's household. During those days, returning to her love of singing and playing music was literally impossible. Today, however, the successes of her current biologics therapy resulting in remission of her Crohn’s, her last surgery in 2018, and good health and nutrition from HPN management have opened the door to the possibility of singing and playing anew; MaryAnn has picked up that ball and run with it in a big way!
Back to Music
In 2018, MaryAnn joined my legacy folk-rock band from the 1970s, Larry Friends and Family, adding her voice to and enriching the soaring multi-part vocal harmonies that the band features. After MaryAnn joined the band, playing together was initially limited to practices and small gatherings. But, in 2022, MaryAnn sang as a member of Larry Friends and Family in sold-out live reunion performances celebrating the fiftieth anniversary of the band.
MaryAnn and I also play and sing as a musical duo, LakePoint Duo. We started the duo in 2019 to play for a neighbor’s fiftieth wedding anniversary party and it has been developing ever since. We’ve built a repertoire of more than twenty-five cover songs and, to date, one original of our own composition. MaryAnn arranges LakePoint Duo’s beautiful two part harmonies and adds keyboard to the sound of the voices and my guitar, producing an exceptionally rich, full sound that delights audiences. In 2022, LakePoint Duo opened for Larry Friends and Family’s reunion shows, played private events, and headlined its own show at a local coffeehouse.
LakePoint Duo (MaryAnn and Donald Neblock) performing in concert in October 2022.
Many local musicians and singers deal with lots of live performance challenges, including the demands of rehearsals, travel, moving, set-up and break-down of equipment and, of course, jitters. MaryAnn and others like her have the challenges of managing their medical needs on top of the demands of musical performance and other activities above and beyond those of day-to-day life. For example, MaryAnn emphasizes that playing the major reunion shows on two days back-to-back after a couple of weeks of intense rehearsals was extremely exhausting. A huge challenge was finishing a Friday night show, packing up, and driving an hour home to set up that night’s HPN at 1:00 a.m.—then doing it all over again the next day for the Saturday show. But she did it. After these two demanding shows, Sunday brought a quiet day at home with well-deserved rest and celebration of the two great performances!
In both the group and the duo, MaryAnne has received lots of artistic praise for her singing and playing. She describes how she loves the return of music to her life, in this way, giving her fulfillment and a sense of completeness. She practices diligently on her own and together with me for LakePoint Duo performances and to expand our repertoire.
As LakePoint Duo, we have even been recording songs in our home studio recording setup to share privately (for now) with family and friends. When a “take” works well and sounds great, it’s a moment of great happiness for her—simply magic—and everything else just “disappears.”
You can ask MaryAnn how she continues day after day, insisting on living the fullest life possible despite the medical adversity life has thrown at her. She’ll tell you it’s about filling all available space with the things she loves—family, friends, cooking, and now, the return to singing and playing—and then to just do them, making accommodations and finding workarounds for the medical necessities as needed.
Visit our website, lakepointduo.com, for more information about MaryAnn’s music. ▼
Photo by David Hutchinson
