I recently went back and reread Ten Days in a Madhouse by American journalist Nellie Bly, after some online prompt reminded the world of her birthday on May 5.
While many will remember Bly as the real-life Phileas Fogg (from Jules Verne’s Around the World in Eighty Days), who circumnavigated the globe in 72 days, it is for her exposé on living in New York’s Women's Lunatic Asylum on Blackwell’s Island for 10 days in 1887 that she is best known to me.
Never before had someone faked mental illness for the purpose of being committed, and then recorded the events for publication. Her account, first appearing in a newspaper and then in book form, shocked its contemporary world and might shock readers today even more. The work’s revelations of neglect and abuse led to institutional changes — and her methods changed the field of investigative journalism.
We Are Also Reporting ‘From the Inside’
The birthday announcement that sent me back to the book was just a couple of weeks on from my 22nd anniversary of diagnosis with multiple sclerosis (MS), and a month to the day after the 17th anniversary of the first Life With Multiple Sclerosis blog we wrote back in 2006.
In so many ways, it’s not a stretch to say that the platform our readers helped to create was our version of the “story from the inside.”
Not unlike how Temple Grandin’s book Thinking in Pictures invited people into her internal life with autism spectrum disorder (ASD), these pages have offered a peek into the world of living with MS.
Insiders and Outsiders Alike Benefit From the Truth of Our Lives
I’ve been living that life (diagnosed, at least) for over two decades. And, as I stated, I’ve been writing blogs, continually, about it for longer than anyone else on the web. My next book about living our best lives with this disease is due out in the spring of 2024.
And you’ve been there with me.
Whether you tuck in and out as needed, have been reading for a good portion of that time, or if you’ve just found our regular musings, the interaction that this platform has allowed, and the information we have shared with the MS community, has been important. That it is also read by people who don’t have MS but might know someone who does is probably as important as it is for those of us with the disease.
Husbands, wives, partners, family members, friends, coworkers; they all have learned about what we live with, how we live with it, and some of the things we can’t get past through these blogs.
Via our Life With MS Facebook page, we are able to converse, pose questions, get answers, and answer one another when it comes to issues related to MS. Many have found comfort in these pages, many find answers, probably many more find that they have even more questions. But we do it together.
We Can’t Get Out, So We’re Doing Our Best ‘on the Inside’
Living with multiple sclerosis isn’t being locked behind the walls of a 19th-century insane asylum. It’s not the same as having autism. It is, however, existing in a world that’s different from the one we anticipated living in.
Our lives are different from the lives for which we’d prepared. Ours is a life many on the outside would not understand, were it not for those of us on the inside sharing our experiences through these pages.
I say “well done!” to all of us for living our best lives, for falling short on more occasions than we’d like to admit, and for learning lessons and sharing those learnings with the Life With MS community for so very many years.
I don’t know how long we can keep coming up with new things to write about, but MS doesn’t seem to stop, so I don’t see an end in sight for ideas and thoughts about MS, either. I don’t see another 17 years in it, but nor did I see the first 17 when I started.
Wishing you and your family the best of health.
Cheers,
Trevis
