Trapped. That’s the best way to describe someone with ALS. A fully functioning mind trapped in a body that can’t move a finger or easily breathe on its own. A disease that overtakes a body, abandoning the soul and mind of movement and independence.
I’ve always felt called to work with and help people with cancer; it’s my vocation as a nurse and as a person. However over the past two years as a hospice nurse my heart has transformed, molded and empathized with so many other diseases. ALS tops the list.
ALS is a degenerative disease of the nerve cells in the brain and spinal cord. The break down and subsequent death of nerve cells cause the brain to lose its ability to control and initiate muscle movement. After the disease paralyzes the extremities, it creeps into the respitory systems and robs the ability to breathe. Individuals and families are faced with the harrowing decision of a life dependent on a ventilator (breathing machine) or a death of respitory failure. At this time there is no cure for ALS and very limited treatment options.
ALS takes robust, young people and transforms them over the course of years into completely dependent, nonfunctioning bodies. The disease affects the person, family and support system to their absolute core. People with ALS require 24 hour caregiving, extensive protection against infections and pressures sores, heavy equipment to assist in mobility, computers to help with communication and relentless love, empathy and grace.
The ALS ice bucket challenge isn’t perfect in explaining the disease and the basis is a little confusing (dumping clean, ice cold water over your head so you don’t have to donate?), but the challenge is spreading awareness and raising money. At this time, ALS always results in death. The main hope is in research and advancement of medicine.
Awareness is essential to the battle. Awareness allows people to understand the need, grace and empathy required for the battle. Awareness stirs our souls and moves our bodies to help those who are truly in need. Awareness motivates us to donate our time, energy and money to a cause that is desperately in need of help.
Obviously there are many other awful diseases in our world and many worthy causes in need of money and donations. The ice bucket movement spreading through our nation and world not only brings hope for awareness and advancement in ALS, it proves we can come together for good, we do have resources to share and we do have hearts that can support and love others.
Just like Jesus did.
Just like Jesus did.