Thursday, November 10, 2011


"Right now, with social networks and other tools on the Internet, all of these 500 million people have a way to say what they're thinking and have their voice be heard." 
Mark Zuckerberg

The key to coping with MS, from my point of view, is to find a way to avoid pessimism, despite the daunting amount of negative information and statistics out there. About 15 years ago when I began exploring the internet, it was the wild wild west, an untamed, unknown universe, constantly evolving in surprising, occasionally scary ways (today it still is, perhaps even more so). Back then, there were bits and pieces of information about the disease floating around but nothing particularly coherent or organized. There were places called “chat rooms” where one could interact with other people facing the challenges of MS; if you poked around you could find people with whom you might anonymously discuss some of the worst aspects of living with the disease. The problem at the time was that, while I was relieved to find some fellow travelers, I kept encountering considerable complaining and whining and self-pity. At first I experienced a certain amount of solace but then I found myself getting very agitated and bummed out.

Today there is more information than is possible to process available on the internet and, fortunately, it is far better organized. Yes, we have tamed it a bit and more recently, I have spent many hours of many days reading all the articles, postings on Facebook groups and in Twitter, the dozens and dozens of blogs (of which I am one), and valuable, informative web resources (“MS Views and News” (, “Patients Like Me” (, “Wheelchair Kamikaze” (, among many others).  However, I find myself constantly conflicted. While I want to stay informed and educated, I don't want to define myself by and through the disease by obsessively reading about it. I promise you, I must live with MS constantly, and there is no way for me to be in denial about it.

Then where do we draw the line? Of course, this is such a personal issue. Each of us must find a balance between our natural impulses to understand the realities of multiple sclerosis and finding people with whom we can bond with and share our unique experiences and living our lives in fulfilling ways without the psychological intrusion of the disease. This becomes increasingly difficult as many of us experience the harsh effects of an unpredictable, progressive disease. We make endless adjustments to accommodate our changing needs. Thus, we must redefine, much more than otherwise healthy people, who we are and what we expect to accomplish in our lives. While it is more challenging than ever to set and follow through on goals, there is still the basic gratification that comes from accomplishing basic everyday activities, even a simple task like tying one's shoes.  

So we go on the internet now and then and are grateful for the plethora of information and the freedom we have acquired to interact with our peers. Still, we have to be careful about treading in too deeply and becoming immersed (dare I say drowned) in in an over-abundant electronic universe. We must allow ourselves the space to BMW (bitch, moan, and whine) or shout some appropriate profanities should that be our pleasure (if you ever watched “Lost” on TV, the character Sawyer had a delightful way of saying "son-of-a-bitch," which works well for me). Once we vent our frustrations, we have to remember the delights we can still experience. Sure, MS has taken abilities from me, but it can't steal everything. I won’t let it. Despite my challenges, I still like to watch sunsets, go to the movies, listen to my favorite music (Beach Boys' “Pet Sounds” today), savor a good glass of wine or an iced cold beer. Choose your pleasure. Do what it takes. Get out there and live your life the best way you can. You are worth it.

Have a great couple of weeks.



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