The connection to the Multiple Sclerosis Society, CT chapter started in 2008. I would get a few calls a year to produce portraits for various publications. I attended one of their fundraising events as a guest and came across a photography book portraying people across the United States diagnosed with multiple sclerosis. Not one person from CT was represented. I approached the chapter about producing a similar body of work on the local level.
At first, it was difficult to convey my intentions given fundraising was always on the forefront of their creative efforts - how will this raise funds? I was thinking one step further back - let’s create an authentic body of work that will better represent how MS is affecting our neighbors. That work could then elevate all of their communications, including fundraising.
The chapter consisted of many hats being worn by few people. The idea of taking on another project was hard to justify. To better convey my intentions, I asked if I could photograph one person to further the conversation.
Karen Guarnaccia
was diagnosed in 1994, just as the first drugs were being introduced to slow down the effects of MS. Despite her treatments, her diagnosis did eventually advanced to where she needed the use of a powered wheelchair.
Karen also experienced some muscle weaknesses in her hands that would make it difficult for her to even hold a book open. Reading was always something that she cherished and having that limited was not something she was willing to accept. Adapting her habits with the use of Kindle enabled her to thrive.
After they saw this image, they were committed. We met regularly to plan and schedule portraits.
The goal of I am a MoSaic was to capture residents of CT still living the life they wanted to live despite their diagnosis. We did not have a specific number of residents in mind, we just kept moving forward and let the project unfold organically.
Over a period of three years, residents of all ages, races, genders, and abilities were photographed. We never had a definitive amount of portraits in mind, we just kept moving forward until with all felt we had what we needed to convey the message.
Multiple sclerosis is an incurable neurological disease where the symptoms vary and are not always consistent. For this reason, we decided to not reveal any portraits until the project was complete to not jeopardize the impact the project could have. All of the portraits together created one portrait of multiple sclerosis.
Multiple Scle·ro·sis
A disease in which the immune system attacks myelin - the protective sheath that surround nerve fibers.
The damaged myelin forms scar tissue (sclerosis) which disrupts the signals sent by cell bodies throughout the brain and spinal cord.
This interference can effect muscle control, vision, balance, and cause numbness.
The Exhibit
To reveal the project, we produced an exhibit at the Chase Family Gallery in West Hartford, CT.
It was a very emotional day for everyone.
Many of the subjects and their families were present. Some conditions had progressed, other symptoms had improved with proper treatments.
Over that next year, I am a MoSaic traveled around the state exhibiting in Hartford, New Haven, and Stamford.
To bring the story of this project to our clients, we produced a handmade book that not only shared some of the images but was also informative to the effects of the disease.
