Where’ve You Been?

Outsiders find it difficult to believe how many people in the tri-state New York City area had a direct connection to the events of that day. My then brother-in-law was in a building across the street from the Twin Towers. Between first responders and people working in the World Trade Center who died that day, I had a personal connection to over three dozen—from childhood friends to the families of friends.

And like many people from the tri-state area, I didn’t just stare at the news. We chose to do something.

In my case that involved providing meal-replacement bars and shakes to those first responders, construction workers, and volunteers working the pile in the days and weeks following the tragedy. Blood drives; purchasing merchandise commemorating the fallen and supporting their families; attending wakes and funerals; these were not enough.

Giving Back: A Cost Without Regrets

Giving back, for me, meant leaving publishing (and Ian Makay) behind to become an educator.

Ultimately, I ended up in a very happy place—Ronald Edmonds Learning Center in Fort Green, Brooklyn. As a city kid, I felt right at home!

As a teacher, I’d landed in what was the perfect spot for an out-of-the-box thinker. Given free rein, I focused on what mattered most—My kids! And helping them hone the skills, resources, and options for creating their own paths and their own versions of success.

December 19, 2009, changed that dream.

It took several months for an array of medical specialists to diagnose it as myalgic encephalomyelitis/chronic fatigue syndrome. (ME/CFS)

Within a year I’d officially join the ranks of the disabled. Living life in constant pain, I was primarily homebound and bedridden. Most disturbing of all, the disease impaired my cognitive abilities—not great for a writer or an educator.

I’m Not Dead Yet!

To further reference Monty Python and the Holy Grail: “I got better!”

A story for another time.

In short: Because of the illness itself, medication is not an option for me. That’s also true for about a fifth of people diagnosed with ME/CFS. An extreme chemical sensitivity means experiencing often extreme side effects to even over-the-counter drugs. So, as the warnings for many of those television pharmaceutical ads note, death is a possible side effect.

Given that choice, I’ll go with Eddie Izzard and take cake! 

My ability to regain and maintain improved health requires effort—not a magic bullet. Therefore, the popular adage fits: This is a marathon; not a sprint. And it is ongoing.

So, “better” doesn’t mean “cured”. There is no cure for ME/CFS. It does still impact my cognitive abilities and physical endurance. That’s one reason things take time when it comes to writing and many other activities which were once simple.

However, because getting better and regaining my functionality was so extraordinary, it put me in a position to help others. That became amplified when I emerged on these things called Twitter and Facebook.

Social Media Hiatus

Teaching (if you’re doing it well) takes a large amount of time.

The Latin term in loco parentis translates to “in place of the parent”—not “my crazy parent” though there may be just a few of us with stories about the latter.

But for educators the term refers to the legal responsibility to act in the best interests of our students in the same way a parent would. With a son at home who was about the same age as the students I was teaching immediately after 9/11, the nature and importance of the teacher-student relationship took on a new meaning.

And like parenting, I was all in!

Consequently, I stayed out of the social media scene until ME/CFS assured me I wouldn’t be back in a traditional classroom setting.

PS: As a “retired” educator, it’s an absolute pleasure engaging with my former students. All are now adults and the bond we share is a reminder of the power of the classroom.

PSS: I’m no longer a “retired” educator. In addition to writing, I’ve returned to teaching as a private tutor and teacher both in the virtual world and in person. And it’s a true joy!

Social Media Return

Social media in the 1990s was centered around chatrooms. My AOL show was, basically, a large chatroom with a script. The final curtain call was 1999. But I continued writing for AOL and print publications.

In hindsight, I had no idea at the time that my little show would have such an impact. That is to say, the realization of what it meant to be the first online food personality never hit me. Until.

By late 2010 social media was not about chatrooms but about the expansive, open street fairs called Facebook and Twitter.

Meanwhile, unbeknownst to me, the Internet kept reposting, reprinting, reprising all my 1990s content. In other words, as far as the online world was concerned, it was as if I’d never left.

As soon as I popped up on Twitter people started addressing me as “OG” and “Legacy”.

[In the nerd lexicon of the time, “legacy” could either mean someone of importance or a piece of tech that still worked but was so old you’d need to wonder why you’d want to use it.]

On Facebook, I fell into the company of an international group of artists. Before I knew it, I was collaborating with them—my creations touring the world. Apparently, Australia seemed very receptive to one project which became museum-worthy.

Meanwhile, on “The Twit” I received a social media award despite my decades-long absence from the Internet and writing. No website. No new books. No new article. Just tweets.

The Power of the Keyboard … and a Good Internet Connection

Twitter in the old days was a perfect conduit for championing nonprofits and their good work. My social media presence then was riding the wave of my 1990s Internet popularity.

Disabled and mostly homebound, there was purpose in those tweets. Even twenty or thirty minutes online felt like it made a difference in helping others. One small voice in a sea of millions, in the back of my mind I was certain it wasn’t much. However, it definitely helped keep me positive and feeling useful.

In the wake of manmade and natural disasters, I posted information from governmental sources, as well as aid organizations and nonprofits. It was simply a reflex reaction.

Unexpected was the feedback. People were openly thanking me for finding medical aid, financial resources, and even loved ones. Realtime information steered people away from danger to safer ground.

Superstorm Sandy devastated the East Coast of the U.S. in 2012. Yet, I found myself in this tiny pocket of Long Island which didn’t lose power, heat, or Internet service. Sitting at my laptop sipping espresso in my robe, I posted information for weeks.

Subsequently, a documentary film group approached me. They wanted to feature me as one of the heroes of Superstorm Sandy. Dumbfounded and a tad angry, I politely turned them down. First responders and just regular people lost their lives helping others. How did a tweet merit hero status?

Recovery Resource 

Between the onset of ME/CFS and my first few years on social media, something that shouldn’t have been possible happened. I began to recover some functionality in ways that amazed the medical community specializing in ME/CFS.

Consequently, I became a recovery resource for these professionals and their patients both offline and online. Social media became a powerful tool for connecting with the immunocompromised community.

Once again, the response from people around the world caught me off guard. It still does even with a much smaller social media footprint these days.

Certainly, the nature of social media has changed since my 1990s debut. But the surreal nature of perceived “celebrity” and the power of a post still amaze me.

Again, perhaps a conversation for another time.

The Big “C” and That Other “C”

So, “cancer, cancer redux, Covid, Covid redux, long Covid, five surgeries, etc.” since November 2017 feel self-explanatory.

Thanks to the folks at Memorial Sloan Kettering Cancer Center, I’ve got a lot more living to do.

Covid’s main impact has been the amplification of the ME/CFS symptoms which have plagued me since late 2009. As was the case before, slow and steady dedication to daily practices is my go-to.

The Road Ahead

Suffice it to say, these have collectively impacted the timeline for my return to publishing. Consequently, I have more to say about many of these topics.

Moreover, their impact is and will remain ongoing. For instance, my periodic hiatus social media since 2010 is evidence of this.

So, there’s your answer to the question which led off this article.

In short, let the aforementioned Monty Python “Bring out your dead” retort do for the time being. I genuinely live life with an attitude of gratitude—not as a platitude, but as a core value!

Most important, I’m here now and plan to keep it that way for a good long time.

After the journey I’ve had, I’m excited about the road ahead!