Reblog: How I Took a Vacation from ALS

How I Took a Vacation from ALS


Hello again! I’ve just returned from my summer vacation — my month-long vacation from ALS!

No, I didn’t suddenly escape my disease or experience a miraculous recovery; my ALS is most certainly still here. My vacation was a mental vacation; an abstention from any and all ALS-associated media; a digital detox as it’s called nowadays.

Isn’t social media a good thing?

Social media has actually been a positive thing for those of us living with ALS. We use it to connect with others who face our same health challenges. We can share ideas, ask questions, offer up advice, and check on the latest research. Plus, I appreciate being able to use social media as a way to share my ALS and Wellness Blog and weekly “Living Well with ALS” columns for ALS News Today, and to give online ALS wellness presentations.

Since my 2010 diagnosis, I’ve noted a significant growth of ALS groups on Facebook. Where once there were three or four groups, I now count over 20. Some even have over 4,000 members!

Unfortunately, that same growth has also increased the number of spammers, “miracle cures,” and widely differing opinions. I can remember reading several heated discussions online that left me feeling I just witnessed a back-alley brawl.

Over time, whenever going online, I began to notice a shift in my own emotional reactions. I felt extreme sadness learning about Facebook friends who had passed within only a few years of their diagnosis. I was astounded at the number of newly diagnosed patients joining groups each week. And I felt frustration with the slow pace of ALS research, which seemed to never get past mouse models and petri dishes!

Social media concerns

Recent news reports highlight the negative effects of overexposure to social media. We learn that too much time on Facebook can lead to depression. That the constant need to check in on posts and messages has a negative effect on cognition and focus. And the increasing presence of social media throughout our days (and nights) can disrupt real-life social interactions.

I found myself reading about ALS, writing about ALS, talking about ALS, and to top it off, I was living with ALS!

Since I couldn’t escape the ALS in my body, I gave myself permission to take a break from reading, writing, and talking about it. That translated into spending the month of August off of Facebook. And I survived.

Actually, I accomplished quite a lot.

I devoted quality time to my daily exercise sessions — not rushing through them as in the past. I had several large projects waiting that required chunks of uninterrupted time to create, write, and design website material. I focused my attention and finished them with ease. I even mapped out ideas for future columns and blog posts — especially to help those newly diagnosed ALS patients.

My productivity, attention span, and clarity of thought all increased while I lived without Facebook for a month.

Here’s how you can do it, too

If you’re thinking about taking a break from social media (all of it or just certain groups like I did), following are a few tips:

  • Let friends and family know your plans. I didn’t tell my online friends, and more than a few sent me emails concerned about my absence. I should have been more inclusive.
  • Start with a weekend or a week, but aim for 30 days. Expect a few false starts in the beginning, but know it gets easier to do the more days you continue.
  • Enjoy your time off. Relax, engage with nature, spend time with family and friends, or tackle important projects.
  • Ease back in. Now that I’m back, I’m sticking with a new reduced social media schedule. I’ve reset my online habits, and it feels good.

Join me in taking control of your time spent on social media and improve your well-being. Join me in learning how to live well while living with ALS.


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