I don’t know if there is anyone out there who has not, at some point in their lives of idle chatter, engaged in a game of “would you rather”. These games vary greatly, from “would you rather sleep with this or that other person”, to “would you rather live through this or that other apocalyptic scenario”. As a teenager, watching my and my friends’ family members age and, for the first time in our lives, confronting death with a semblance of understanding that this will eventually happen to us, the most common form of “would you rather” that came up was one of much discussion and heartbreak.
If you are lucky enough to reach old age, would you rather die of a degenerative disease which steals your mind, or steals your body?
The perspectives that were brought to this discussion varied greatly, and with them were brought the terrible truths of what our elderly relatives were facing. I watched my grandfather die of Alzheimer’s disease, and I saw what it did to my grandmother. One of my classmates was watching his father degenerate with Parkinson’s, another’s aunt with MS, another’s grandmother with a type of violent Sundown Dementia. The discussions were long, sometimes heated, and always left everyone in a thoroughly depressed mood, but somehow we could not keep ourselves from prodding that sore spot as the discussion recommenced a few days later with fresh perspectives and thoughts.
The crux of the argument came down to this: would you rather know what is happening to you, or not? Of course the nuances of this are complicated: most people with dementia go through a terrible time of their lives when they realize that their mind is deserting them, though by the end they at least seem to be blissfully unaware. Diseases that steal the use of your body are sometimes accompanied by unendurable pain, sometimes not, and sometimes are accompanied by feelings of guilt as you know exactly how much of a burden you are on your family members and caretakers, but not being able to do anything about it.
I think it was these discussions that brought my meandering scientific journey to end up in the study of neurodegeneration and aging. It is not about “looking for the fountain of youth”, or the “secret to living forever”, as so many people blithely ask me when I tell them of the topic of my research. It is not so much about prolonging lifespan, but prolonging healthspan, which is so much more important to so many more people than a megalomaniacal wish to live forever. It is because there is no right, no obvious answer to that terrible game of “would you rather”. The fact is, both are terrible.
I cannot imagine the feelings of claustrophobic frustration that people with locked-in syndrome must go through. I cannot bear to think of the early stages of Alzheimer’s that my grandfather went through, that feeling of being so sure of your surroundings then watch them get snatched away from you as your lucidity kicks in for an instant, like living in a perpetual hallucination that you know will only get worse and eventually consume you. Even putting aside the immense costs to society and family of elderly care of such diseases, the suffering that they come with alone inspire me and make me want to contribute to researching ways to if not prevent them, at least mitigate the symptoms.
I sometimes get disdain for my chosen field. “Do we really need to have an even older population?” is one common question. “What about diseases that affect children/the world is too overpopulated anyway/what about global hunger” is another, as if we should all decide what is the single biggest tragedy in the world, all work towards fixing that, and fuck everything and everybody else. To me, I don’t see the suffering of the elderly (and often the not so elderly at all, if we want to consider ALS and MS as examples) as any less deserving of attention than the suffering of anybody else. I do not pretend to swoop in and be the one person to cure Alzheimer’s disease, that would be ridiculously self-important to the point of being Trumpian. But what does get me through the daily grind, and the long hours, and the experiments going sideways just when I’m under pressure is knowing that I am, in my teeny tiny way, contributing to a body of knowledge that will, and is every day, chipping persistently away at this boulder of a problem until there will be nothing left. That does not mean that I see the problem that I am working on as the most important thing in the world, and that everyone should stop what they’re doing to either join me or give me a pat on the back. It means that this is my way of contributing based on what I am good at and what I can do, with only the greatest respect for those who focus on other tasks and other problems to solve based on their talents and expertise.