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What You Should Have In Common With Pearl Jam

(Seriously. Oh, and that's not Pearl Jam in the picture.)

 

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“I have faced it, a life wasted.  I’m never going back again.  I escaped it, a life wasted.  I’m never going back again.  Having tasted a life wasted, I’m never going back again. I erased it, a life wasted, I’m never going back again.”

“Darkness comes in waves…tell me, why invite it to stay? 

Life Wasted, Pearl Jam

These Pearl Jam lyrics are like an anthem for me, they speak my story of the years that I lost to MS (that I allowed MS to take from me), and they’re great to turn to when the recurring “BS of MS” tempts me to slump back into the backseat in my life. 

There’s no question that MS can really do a number on us physically, psychologically, and emotionally.  When feeling physically exhausted and emotionally drained, the idea of somehow being “in charge” of how our lives go can seem impossible.  But, here’s the thing: We may not be able to control how our bodies behave on a daily basis, but we DO have a say in what kinds of plans we make to manage life with that MS uncertainty.

The alternative is going back to or continuing what feels like “a life wasted,” simply living passively or reactively based on what the MS decides rather than based on how we want our lives to look, feel, or be.

I actually saw Pearl Jam live a couple of years ago…in spite of having to spend several hours in a car, in spite of my disability, and in spite of my fear of being in a rock concert crowd when I was struggling with walking and balance.  I went with 2 friends who kept me safe and I really enjoyed myself (and the band played Life Wasted as part of the set).  I had let the MS keep me away from concerts like that and pretty much the music scene in general for years, but I’m not going back to living like that again (I saw Soundgarden the following year, RUSH’s 40th anniversary concert at the Garden last year, and am looking forward to my next big show)

And, just last week, I went to The Metropolitan Museum of Art for the first time in I don’t know how many years.  The sheer size of the place had been too daunting to me because of my trouble walking and some of the emotional and psychological “stuff” I felt from memories of better times and how I used to be able to walk around that place with no problem.  Having to face my “stuff” about the past and getting over feeling bad about having a friend push me in a wheelchair the entire time were the hurdles I had to clear first, but then I was able to add the museum back into my life again.  My friend gladly pushed me around and we even had some fun with it (she asked the guard about whether there was a speed limit, and we had a little fun on the straightaways).  All in all, it was a great visit and I’m really happy that I went.

It’s unfortunate how many years I let go by without concerts, museums, and so many other life activities simply because I had succumbed to the BS of MS.  I’m learning more ways to plan around MS physical concerns and strengthen a mindset that enables me to live actively once again.  We can all work on doing that.  Do you feel like you’ve “wasted” time because of your MS?  Can you make a commitment to yourself to not waste any more time?  Start small.  Think of one thing in your life that you think you can start trying to manage or participate in more actively (A social life? Getting out to visit a friend or having them come visit you? An artistic or creative project that you’d like to start or continue?). 

Now, think of one step you can take to get active in that thing again, and do it this week (You can do it!).

 

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"OVERCOME THE BS OF MS: A 3-STEP PLAN FOR WOMEN LIVING WITH MULTIPLE SCLEROSIS"

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