This post is a bit more personal than most. One of the original readers of this blog, and its most committed commenter, passed away a year ago this month, from complications related to multiple sclerosis (MS). Floyd Frank had more faith in humanity than I do and was skeptical of the hype surrounding AI; he certainly didn’t think he’d live to see AI surpass Homo sapiens. In that, at least, he was right. Nevertheless, his physical struggles highlight the promise of technology, especially AI.
He was a mountaineer and avid outdoorsman who had summitted all the 14ers in Colorado and most of the slumbering volcanos of the northwestern US. When MS initially struck, he ignored it, fearing that a doctor’s visit would reveal Parkinson’s, a diagnosis he couldn’t face. Eventually the symptoms – and his wife – pushed him into a neurologist’s office, and a panoply of medications followed. One worked better than others, but it came with the risk of a fatal brain disease known as PML. At any rate, none of the pharmaceutical options slowed the course of the disease enough to allow continued active access to the mountains he loved. Disability stalked him from the ground up, crawling through his legs leaving wreckage behind and reaching rapacious claws into his organs. Increasingly feeling imprisoned in his body, he stopped taking any medication, preferring to let Nature take its course.
In the future, those facing a similar diagnosis and progression are likely to have more alternatives. Although pharmaceutical advances are the most obvious possibility, the risk of PML lurks around even some of the most recent and more promising MS medications. Consequently, perhaps the best hope for those with MS – and any other neurological disorder – is that science fiction will become reality, and we’ll be able to swap out the wonky biological bits of ourselves for superior artificial parts.
A previous post explored the dystopian potential of artificial augmentation, but for those facing chronic illnesses – especially those with creeping disability – being able to circumvent the inexorable torment of unreliable organic components would be a palpable improvement in quality of life. Although replacing the brain itself would be a panacea for neurological ailments, focusing on refurbishing the faulty wiring of the nervous system is a more feasible solution in the near term. In some cases of paralysis, for instance, spinal implants combined with physical therapy have shown success in restoring mobility. Artificial parts can also be external: most people have probably seen footage of paraplegics testing mind-controlled exoskeletons.
Another tantalizing option, at least for those like Floyd, whose infirmity was physical rather than mental, is virtual reality. Virtual environments like Second Life already exist, and some people spend most of their time interacting via the platform rather than face-to-face. Technology is advancing quickly enough that interactions could soon include the full spectrum of sensations, providing, for instance, those who are physically confined the feeling of unconstrained movement. For many, this sort of synthetic experience could help avert depression.
Implants and virtual reality don’t necessarily rely on artificial intelligence, and they treat only symptoms of neurological diseases rather than the underlying ailments themselves. True artificial intelligence, on the other hand, could replace our capricious, carbon-based forms. Floyd wasn’t sure he liked the sound of that.
In full disclosure, Floyd Frank was my uncle, and I also have MS. Shortly after my diagnosis, I climbed Mount Rainier, where Uncle Floyd had been a ranger in the 1970s. His disease had progressed enough that walking was difficult; I took his antiquated crampons on my ascent, so that he could have a last, vicarious summit. Despite some altitude sickness and festering blisters, I could almost understand, looking around from 14,411 feet, feeling the breeze on my face as I lay back into the snow, exhausted, why Uncle Floyd would have been uneasy about giving it up for a silicon existence. On the other hand, if the silicon were good enough, would we know the difference?
Juan Soliveres says
Your family history of MS resonated with my own experience. My uncle was diagnosed with MS for years before being rediagnosed with cadasil. It seems there is some misdiagnosis between the two so I felt obliged to comment in case is of any utility to you. I am sorry if this comment is inappropiate. Feel free to delete it. Best regards.
Patti says
Well written, Julie.
❤️
Chris Rosenfelder says
I found your essay to be very affecting and your sentence describing MS’s assault on Floyd’s body heartbreakingly eloquent. May a many-sided attack on the cruel disease quickly find effective treatments. So good that you could take your uncle Floyd’s crampons up Mount Rainier.