Every five years, the Central Statistics Office carries out a detailed count of every person living in the country in the place they are sleeping on one particular night; it’s called Census Night. Last time, I was away from home on Census Night and was counted in my hotel room in Dublin as a “visitor.” This year the census form, along with the standard questions about household numbers, occupation, education, health conditions, and the like, included an open box for the nation to record their thoughts for the future. The details of the census — beyond the obvious statistics like numbers of people and their locations — are sealed for 100 years by law. This year’s document gave us all a space to write down whatever we liked for those living a century from now to know about us. We have heard of touching anecdotes of people listing the names of their children who did not survive between the counting sessions so they would be known. There was a call to list the names (and variety) of our pets, as they are not counted in any other questions. But there were no rules as to what you could write or requirement that you use the blank space at all. It was an interesting exercise.
What Was MS Like 100 Years Ago?
It got me wondering what someone 100 years ago would have said about their life with multiple sclerosis (MS). How would it differ from the life I’m living? How, I also wonder, would it be very much the same? With my MS diagnosis turning 21 this year (and undiagnosed symptoms extending a decade and a half before that), I’ve seen dramatic changes in the way the disease and the people who have it are treated by medical science. The number of medications approved to treat MS has increased by more than seven times since I was told I had the disease. Less than a decade before that, there were no medications proven effective at slowing the disease. And that was as good as we could hope for — to slow the disease. Now the goal of treatment is NEDA, or no evidence of disease activity. Not bad for just over 20 years.
What Will MS Be Like 100 Years From Now?
Beyond meds, though, how has life with MS changed in the past 100 years? How will it change in the next century? Will there even be a disease called multiple sclerosis by then? The answers are impossible to know. We’d like to think that MS will have been cured by then. Many of us believed it would likely have been cured by now, so I’d say the odds are good for 100 years from now, but it’s not a sure thing. If it’s not cured, will our daily lives be made easier in other ways? It’s only been 32 years since our rights as disabled people were codified in law by the Americans With Disabilities Act (1990). That changed much, though many will say not enough. Will there be political will to make up for the ADA’s shortcomings in the future, or perhaps will such statutes not be necessary as society evolves? We all hope that young people diagnosed with MS today will have a radically different experience with the disease and life with it than we did. In 100 years’ time, will they look back on how we did things as arcane or as paradigm-changing and the base upon which a better way of treating both disease and people was built?
Let’s Hope It Doesn’t Take 100 Years
If I had the space to write something in an MS time capsule to a world 100 years in the future, what would I say? What would you say? What would those words say about us and how we cope? Would our words sound as foreign to them as a diary by someone living in isolation due to leprosy would to us? Or would our words sound as familiar to them as news of the latest disease-modifying-drug approval sounds to us? Surely science and society have made great strides in the past 100 years, and the next 100 will see many more. I guess I just wish that some of those earth-shattering discoveries we all hope to see in the future would happen a little closer to my end of that century. Wishing you and your family the best of health. Cheers, Trevis
