Several years ago while working as a social worker on the respiratory service at a local hospital I worked with a doctor who ran the ALS clinic. When his patients were admitted to the inpatient service, I was usually assigned to work with them and their families. Usually they were not new to the diagnosis but the stage at which they were admitted was often the point at which they could not return home. For most it meant the point at which they were put on a ventilator to help them breathe. Many would walk in the hospital in crisis, never to be able to walk out again.
While I worked on many services over the 12 years I worked as a hospital social worker, and sadly saw many illnesses rob people of their abilities and their lives, my years on that service and the people I worked with there, left a lasting impact on me. I came to the conclusion that if there was a 'worst disease' to die from, ALS was it. I saw people robbed of their abilities to care for themselves, their ability to talk, their ability to walk and I saw families ripped apart from the stress and the decisions they had to make on behalf of their loved ones..
The worst thing perhaps about this illness, is that the one thing you are not robbed of, is your mind. The clinic staff would relate it to being 'buried alive' and truly, there is no better analogy. Ethically, this illness raised many issues for the staff - especially when patients had chosen to be put on a ventilator when they could communicate but after a certain amount of time and significant deterioration, the family chose to remove it which quickly led to the person's death. It also raised issues of quality of life and how we were ill equipped to decide what quality of life meant to others. I carry with me so many lessons from those years and the patients and families I worked with and truly it shaped the person I am today.
Unfortunately, most people who knew about ALS in 'those days' were people who on some level were directly impacted by it. While 'one is too many', mercifully it does not impact people in the volumes that cancer or heart disease does so it is not talked about much, not part of the diseases that you see massive fundraising campaigns for and not something most people worry about getting. But, that was before the power of social media campaigns and talk of dumping buckets of ice on one's heads in order to increase awareness of this horrible illness.
In the last few weeks, social media has been filled with videos of people dumping ice on their heads and challenging others to do the same. I have to admit, I don't quite understand where buckets of ice relate to ALS but it is a very interesting idea that seems to have captured the world's attention. And more importantly, it has raised millions of dollars in support of this disease. I suppose, it speaks to the potential power - a positive power in this case - of social media and the significant impact it can have on the world at large. My hope is that this is only the beginning of the increasing awareness of this illness, it's impact and the need to find a cure for it.