I’ve worked in the field of medical psychosocial care for twenty years. I have supported thousands of people through their journey when facing an illness and yet there are some illnesses that don’t receive the attention of others. We are aware of the host of celebrities with breast cancer, we hear about Montel Williams life with MS, Michael J. Fox has been a face attached to Parkinson’s disease and these are just a few of the consciousness raising moments the general public is privy to.
In the past week I’ve been told about two recent deaths from Amyotrophic Lateral Sclerosis (ALS), what many know as Lou Gehrig’s disease. I went to the ALS website and found out that May is ALS awareness month. There are many events around the country and legislative forums related to funding throughout the month.
The disease was first described by a French neurologist, Jean-Martin Charcot back in 1869. Although there are continual advancements there isn’t a lot of awareness and you have to wonder how that translated into research dollars and other types of support. It wasn’t until I went through the website that I found the “famous” people who have bravely faced this disease.
How does the increase in consciousness help us when you’re looking for resources to overcome the challenges of an illness. What is it that keeps certain illness quieter than others and is it time to turn up the volume when access to funding for things like stem cell research or gene therapy could unlock the mysteries? This is why escaping anonymity is so vital not only to our life as pilgrims, but in the access gained in the larger arena. How will you make your voice heard?