I’ve often said that it took me nearly five years to get my head around what multiple sclerosis (MS) was doing to my body before I could get my heart around the concept of living with the disease.
That assessment still seems spot on today, as this month I mark 20 years since my diagnosis — and a few weeks ago I noted that I’d been writing the Life With Multiple Sclerosis column for 15 years.
Writing About MS Has Provided Purpose and Community
Writing about MS, both in this blog and later in my memoir, Chef Interrupted, has been both a balm to soothe the frequent indelicacies of the disease, as well as a way to regain a sense of purpose, which I’d lost during those first few years post-diagnosis.
As a result of my writing down my thoughts, concerns, opinions, and experiences — both successes as well as failures — around living with an incurable disease, and sharing my writings publicly, a community has coalesced and has become a support system unimaginable in the days before the internet.
My Early Years With MS Were a Bumpy Ride
My multiple sclerosis has been nothing like I would have expected it to be, but that’s likely because I had no expectations. I knew so very little about the disease back in April 2001. I knew one person whose mother had MS, and I was aware that the actress Annette Funicello was living with the effects of the disease, but I couldn’t have told you any details if you’d asked.
My learning curve was steep, and my reactions to what was happening to my career, my relationship, my friendships, and my perceived worth to society made for a bumpy ride. I surrendered far too much of myself to multiple sclerosis in those early years. Mistakes were made, but, as my father says, “it’s not a mistake if you learned something from it.”
We Edit What We Put Out There, but We Live Unedited
My life with MS — the one I’ve put out there for people to read about — has been an edited version, to be certain.
In a recent meeting (via Zoom in these mad times) with the MS & Me blog team at MS Ireland, I was talking about the importance (and difficulty) of proper editing. I related the story of having my own story cut, pasted, red-penned, and reassembled so many times that I’d lost count.
Without the lessons from years of writing this column for Everyday Health, the experience would have been even more painful than it was.
That is an important part — perhaps one of the most important — of what I’ve learned over these past 20 years. We all edit what we put out there in the world, but we live an unedited life with MS.
Good Writing Usually Requires Good Editing
I think back on films like Wonder Boys, Love Actually, or so many others portraying a writer banging away for tens of years and thousands of pages. They write themselves deeper and deeper into plot holes and then try to write themselves back out rather than binning the offending paragraphs, which lead to chapters of failed reconciliation.
At some point in those films, the pages onto which the writer has let his veins flow meet an errant breeze and are lost forever save in the mind of the author himself. The character always succumbs to the realization — obvious to viewers since the end of act one — that the life’s worth of writing was bad and not worth saving, but they now know how the piece would work for public consumption and will be a bestseller in no time.
It’s all about the editing (and in these cases, some editing credit goes to Aeolus, keeper of the winds).
The Unedited Version Is Less Readable but Truer
We live the unedited version of our lives on good days and on bad days, through exacerbation and remission. We experience the dictionary, thesaurus, and all of the style guides’ worth of MS, and that is our unedited story; our ManuScript. (See what I did there?)
It is unabridged, unedited, full of typos, misspellings, and mistakes we have made along the way. It is our truth, and it is the story we wish everyone knew about life with this damnable disease. But it is not fit for general audiences.
No matter what people think about what it’s like to live our lives with MS, they can judge only from the edited snippets they peruse. Those are the carefully redacted and creatively revised digests we have put out to press. They cannot read everything we have written, only what we choose to publish … only what we have edited.
But it is the unedited life we live that we all know is the truest representation of the experience.
Twenty years into my life with multiple sclerosis, I’ve embraced the editing process, but it’s the living and documenting of my life with multiple sclerosis — the one that will remain unpublished but on my own bookshelf of being — that I know is my real story.
Live an unedited life.
Wishing you and your family the best of health.