Lindsay Abromaitis-Smith is a 37 year old artist living with ALS. She was diagnosed in 2012, and six years of this journey has yielded both unimaginable joys and hardships. Before her diagnosis, Lindsay was a professional puppeteer and bodyworker living and working in NYC. In 2015 she relocated to Flemington, NJ, where she and her mother Karin are both long-term artists in residence at the Takaezu Studio
. While Lindsay and Karin both continue to make art, Karin has had to give up the bulk of her career as a director, teacher, potter, and jewelry designer in order to manage Lindsay’s full-time care needs. Lindsay has been unable to puppeteer since the first year of her diagnosis, and after mounting a movement-based piece exploring her experience with ALS
in 2013-14, she has become a painter
, using her feet to paint large acrylic canvases that explore texture, color, and symbology.
Living with ALS and managing the full-time care needs of an ALS patient are two of the most demanding experiences imaginable. Lindsay relies on a motorized wheelchair to get around, an eye-controlled computer to communicate with, and a cough-assist machine to keep her airways clear. She needs 24 hour a day care, and relies on human assistance to eat, get in and out of bed, use the restroom, shower, brush her hair and teeth, get dressed, scratch her nose, and pet her cats. Medicaid covers 40 hours a week of this care, but the other 128 hours a week are up to Lindsay and Karin to manage and pay for. Ensuring that they have quality care available to Lindsay at all times is the biggest ongoing expense and the most urgent need for their household. In 2015 Karin did the bulk of this “after hours” caregiving herself, unpaid; in October of that year she suffered a stress-induced heart attack and as a result is no longer able to fulfill this role herself.
To pay one or more caregivers trained in caring for an ALS patient a living wage of $20/hour for these hours costs $10,240/month.
For the past three years, Karin and Lindsay have relied on a combination of government subsidies, income from art sales, and donations from aid organizations and friends and family to cover the cost of Lindsay's care. Since Karin has put her career on hold to care for Lindsay, she has been drawing from her retirement account to cover costs when their expenses exceed their income, which is frequently. This is unsustainable; to be blunt, she simply does not have enough to finance the care that is needed.
In addition to the primary expense of Lindsay’s care, other monthly expenses include supplements and functional medicine such as acupuncture and massage, the cost of insuring and maintaining Lindsay’s wheelchair accessible van, phone and internet bills, and travel expenses for Lindsay and Karin, who could both really use a vacation.
Any and all donations will go directly towards providing for Lindsay's care and are appreciated beyond what words can express.