Putting a Face to An Invisible Disease - MS
You'd never know just looking at me
I was diagnosed with MS in 2005, and it is an invisible disease. It has few physically obvious indicators that would let you know a person is suffering with it daily. Most people who receive the news that they have MS are not cookie cutter in their response to the news. There is usually a combination of shock, denial, anger, sadness, disbelief, hopelessness, fear, depression and many other emotions including relief. MS can come in different forms, some forms are Remitting Relapsing, Primary Progressive, and Secondary Progressive. I have Remitting Relapsing MS which means I have times when I have active symptoms and times when I don't. I consider myself lucky.
What is MS?
What is MS? That is probably the first question asked when a doctor tells a patient that they have MS. The disease itself affects the Central Nervous System, CNS. It causes a breakdown in the myelin sheath of the nerves, which in turn cause interferences and misfires of signals from the brain to the body. It can also lead to damage to the actual nerve and permanent disability.
Each patient has both different, and similar symptoms. The disease often affects vision, mobility, balance, energy levels, nerve pain, cognitive ability, muscle spasms, memory and speech among others. It is so hard to describe in concrete terms because the very nature of MS is change. Depending on what part of the brain and which nerves are being affected determines what symptoms your body will display. It is so frustrating for patients, and also for their families. Today you might have a good day, and tomorrow you might be in so much pain, be extremely dizzy and have double vision so bad you can not walk or get out of bed without help. It can last for hours, days or weeks, and then go right back to being normal again until the next time. This is what my MS is like and I consider myself one of the lucky ones, I get good days.
Fear is one of the hardest aspects of MS to learn to live with. Fear of the unknown, not knowing when, where or how it might affect you. Scarier for me than the unknown though, is the fear of the progression of the disease. It can change, and get much worse. Progressive forms of MS are unmerciful on it's victims, they can lose function and control of their bodies and lead to death. While this does not constitute the majority of MS patient's experience, it is a possibility for most.
MS chips away at you a little at a time. It really isn't until you stop and look back, that you realize it's toll on you. It creeps up slowly, coming and going, coming and going so that you don't notice the subtle changes.
Jennifer is an artist, and true to form, her response to being diagnosed with MS was to express her feelings through her art. She has started a project called A Year of MS. She is doing a portrait for each day of the year of a person suffering with MS. I am including a link to her web site here. http://www.kickstarter.com/projects/1614764737/a-year-of-ms
She is working to put a face to MS and to bring awareness to the disease and those affected by it. I feel this is an important message, both for the patients and those who love and care for them. MS creates a daily struggle physically, mentally, emotionally and spiritually. More than 2.5 million people have some form of MS world wide, approximately 400,000 in the US. Chances are, most people reading this know someone who is affected by MS.
365 Faces and Stories
Jennifer's plan is to paint, sketch, draw, and display the face and story of 365 people who suffer with MS. Day one started with a portrait of herself and her reasons for taking on this project and how being diagnosed affected her world. Some of her portraits can be seen on this site, http://ayearofms.wordpress.com/ . They are as unique and varied as the lives and stories she depicts. Take the time and check it out, share the links, and help Jennifer in her efforts to finish this project.
I believe that Jennifer's idea is novel and creative. It is designed to be a therapy for her as well as for each subject in her portraits. By helping others have a face and a voice in their own battle with the disease MS, she is working through her own journey in coming to terms with what MS means in her life.