20-Year Blogiversary

I once wrote about the annual recurrence of the date on which I was diagnosed with multiple sclerosis (MS) as “the anniversary I don’t celebrate.” It’s one of the many, many, MANY topics we’ve tackled here in the Life With Multiple Sclerosis column.

From breaking clinical research to tips for living with the disease, we’ve taken on the good, the bad, and the frightening for more than 20 years now.

Twenty years!

I’ve written more than 2,500 posts and in excess of 1.5 million words about living our lives with MS. One old friend and fellow MS writer, Declan Groeger, once asked me where I came up with the sheer volume of topics we’ve covered. I didn’t have to think about it for long. As I stated in my very first writing on the subject in 2006, “It’s all about you, really!”

How I've Kept It Up for 20 Years

I’ve always felt that if I wanted to know something about MS, others might well want to know it, too. If I found it difficult to source information on one specific MS topic or another, my fellow MS travelers would as well.

If I was experiencing one of the seemingly countless aspects, symptoms, or medication side effects that come along with living with and treating our disease, I figured you also experience them.

So I write about my experiences and my searches, my successes and (more often than I’d care to remember) my failures. One who learns from his mistakes is smart. One who learns from others’ mistakes is wise. I hope that over the years, my mistakes have helped some of our readers become wiser. I know I’ve become smarter for all my mistakes.

It’s difficult to look back and remember all of the writings and interactions on a singular level. I did go through more than 1,800 posts when Emma Rogan and I were compiling and editing the book Living Well With Multiple Sclerosis.

More so, I remember some interesting trends in the writings and the responses from our MS community.

Learning Together

First, I remember us before social media. I think it was three or four years into Life With MS before I joined Facebook so I could start a page for our readers.

During those years, the blog had a comments section. Readers could comment on the writings, but more important, they could comment to one another. We very quickly went from a place where you came to read about MS to a place to learn and discuss together. We became one of the first MS online communities on the web.

Missteps and Losses

I remember the dark times — for example, when the MS community was nearly ripped apart by the hope and disappointment surrounding chronic cerebrospinal venous insufficiency, “a term used to describe the narrowing of veins in the neck” and first linked to MS in 2009, according to MS Society UK.

I recall when we all first read the letters “PML” and learned how to pronounce “progressive multifocal leukoencephalopathy,” described by the National Institute of Neurological Disorders and Stroke as “a disease of the white matter of the brain.”

I remember the names and faces and laughs of friends we have lost over these many years.

Finding Connections

Most of all, however, I think back on how writing something that might have felt like a bit of self-indulgence, a throwaway, or a topic or experience that was far too personal to resonate with readers did just that.

“I thought I was the only one.”

“Me, too!”

“Thank you. I thought I was crazy . . . ”

These were the types of responses that have kept me going when, I’ll admit, I sometimes felt that a (late) 50-something white man writing about his life with MS might no longer be relevant.

A Chance to Learn

Writing about MS has afforded me access to leaders in the world of advocacy, research, and healthcare, as well as so many online relationships with people also walking the MS path with me.

That access has begat knowledge and information that I can, in turn, pass back to those of us living with MS, while also passing the opinions and feelings of us on this side of the disease back to the researchers and advocates.

We’re not only a community; we’re also a well of information and experience that many have come to dip from and then leave something new for others.

What a legacy you and the Life With MS community have become.

I recently sat down for a podcast interview with Fergal O’Keeffe, of MS Ireland, to talk about living well with MS and the 20 years I’ve been writing about it.

I don’t think I’ve another 20 years in me. In fact, let’s hope that the world won’t need anyone writing about their life with multiple sclerosis in that time. Until then, I am, as always . . .

Wishing you and your family the best of health.

Cheers,

Trevis