79. Positive Energy

No matter what’s going on in your life, one thing is for sure, you need to surround yourself with good energy.  This means good times, good TV programs, good food, a good job, good everything, including people.

I had a friend that I spent some time with who I quickly discovered to be such a drain on my energy, I just couldn’t continue the friendship.  After I found myself comforting her when she had a very public meltdown over the news of my diagnosis, I knew there was only so much I could handle at that time.  While I understood that the news was upsetting, and glad she cared enough to be upset, I couldn’t help but feel like only a few days after receiving an ALS diagnosis, maybe she should have been the one consoling me.  After several other incidents, a year or so later, I called it quits.  I don’t think she ever understood, but I couldn’t be drug down by anymore negativity.

Some people go as far as not even reading news articles related to their illness.  They don’t participate in support groups, whether they are in person or online.  They feel drug down by all the negative discussion, acceptance, and expectation to continue to follow a pattern of decline in their health.  I have to say that I agree.  It can be hard to stay positive when chatting with people who have totally accepted their doctors dismal predictions for their future health.  I participate in online support groups, but don’t spend a lot of time on them.  I offer my support and opinions, but don’t often stick around for the whining.  I know we all have our down days, and I do my share of whining, but I do what I can to keep my battery fully charged!

I try to keep the positive energy going by watching what I put out into the world.  I am trying to be more careful about how I say things.  For instance, I am trying to remember that I was diagnosed with ALS, I am not taking ownership of it by saying I have it.  A little change, and you might think it makes no difference what words you use, but I believe it does.  It’s such a small thing, why not change it?  I also have revamped my Facebook newsfeed.  I have unfollowed anyone who continually posts negative news and comments.  I no longer follow everyone I am friends with who were diagnosed with ALS.  I don’t like all the negativity.  I feel much better these days, scrolling through my newsfeed.

I take a few minutes a day, when I first log onto my computer, and watch an uplifting video.  Right now I’m watching Wayne Dyer daily.  Do whatever you can, wherever you can to keep your positive vibrations going.  No matter how small, it all adds up.  I am right now sitting in an extremely  messy RV, because we have not yet put anything up from our drive to our destination.  But, I am trying to concentrate more on my beautiful view of the Gulf waters outside, than the mess surrounding me!  Every tiny focus towards the positive helps.  Try it, and see.


62. Keep A Song In Your Head

When the world around you is collapsing,  it’s good to have a song floating through your mind to get you through it.   Your own private playlist of tunes to see you through your day.   Music can have the power to turn around any mood you may find yourself in. When things aren’t going the way you would like, stop and think of whatever song you love at the moment, and I guarantee you will feel better!

When I was getting ready to go off to college, my mom asked me which I would rather have, a television or a stereo?  She would buy me one for my dorm room.  That was an easy decision.  Definitely a stereo.  While I could live without a TV, I didn’t want to live without constant access to music.

Mother Nature has her own music.  Just step outside and hear the wind rustle through the leaves on the trees, the birds chirping, the sounds of life.  It’s everywhere, when you slow down long enough to listen, you will hear it.

Music has power.  The power to change moods, to change minds, to change people, to bring people together, to heal, and so much more.  Keep a song in your heart and running through your mind and you will be a happy person.  Be one of those weird people who hum while they are walking down the aisles of their local Wal-Mart or grocery store,  while they are pumping gas into their car, sitting at a red light,  etc…  Those people are happy and they don’t care what you think.  They don’t care if you think they sound ridiculous because they are humming a song.  They aren’t worried about how long it’s taking that red light to turn green, or about the person who cut them off in traffic, or about the news on the television.   They are oblivious to the things that might normally upset them while their favorite song is floating through their mind.

Can you imagine what a huge difference it would make if everyone just kept a feel good tune in their heads?  It’s really hard to yell at someone when you are in the middle of your favorite song.  You wouldn’t care as much about anything else.  Have you ever been to a concert?  Do you remember thinking about the latest news, or anything else, other than the music while you were there?  No. That’s the power of music.

I’ve got a song and it must be sung

everyday’s a war, and it must be won

whenever I feel like I’m comin’ undone

the song in my head keeps me marching on

– Sarah Jarosz




30. Half A Stick Of Gum Is All You Need

Half of a stick of gum is all you need.  When I was a kid,  whenever I visited my grandparents, to keep us occupied during church, my grandmother would give my sister and I a piece of gum.  But, only one half of a stick of gum.  Even for a kid, that’s not much.  That’s plenty, she would say. 

I have found that there are a lot of things,  like that half stick of gum, that  I was used to having which, I have realized I can get by without.  I found out,  with ALS,  that it’s amazing how much muscle you can lose,  and still live a somewhat normal life.  I was walking around,  doing everything I always did for years with a great deal of muscle loss.  I got by with much less than I thought I needed.

I had one of the original big bulky bag cell phones,  back in the day.  I had it mainly to use in case there were an emergency,  like if my car quit,  because I drove 40 minutes to and and from work everyday.   So, after I had to quit working due to my health issues, I just never got another phone.  I  went for years without having or using one.  Which means I had also never texted, other than from a computer. And, I lived to tell the story!  I found I could survive without one.  I finally got a new cell phone last year,  after  15+ years without one. 

I could never have imagined sitting in one spot and not moving for an hour or even two hours before ALS.  Sure, we all say, “I wish I could just sit and do nothing!”  What we really mean is we wish we didn’t  have to go to work, or do any of our daily chores, but moving about would still be an option.  What about when moving isn’t an option?  I’ve found it really is possible  to sit and literally not move,  without going totally crazy.  Even a couple of years ago,  I was used to  asking one of my daughters help move my leg or arm after an hour of not moving.  But, when that was no longer an option, I found I could survive moving  less often than I had thought.

I used to always be on the go.  Now,  leaving the house numerous times every day is just a distant memory.  I could never have imagined staying in for days, let alone weeks at a time without leaving the house.  Now that seems totally normal,  and rarely bothers me at all.  It helps that most of those periods of time occur during the winter, when just the thought of the cold Indiana weather is enough to make my body ache,  and all I want to do is stay in and stay warm.   I have experienced cabin fever first hand, but I’ve also learned that you really don’t need to leave the house everyday, every week, or even every month to be content.  

We all find ourselves thinking about the things we think we need.  The latest model  TV,  or newly released IPhone or IPad.  Whatever it is,  it may be something we want,  but usually we can definitely do just fine without it.  I’m glad I learned early on,  that you don’t always need as much of something as you think you do to be happy.  Sometimes half a stick of gum really is plenty.


26. Laugh. Even if you don’t feel like it.


Who says TV is bad for you?  I know I heard that somewhere.  Maybe it was just sitting too close to the television set that I was warned about?  Anyway, contrary to popular belief, I think television and movies can be good for you.  In the movie, What About Bob, Bob takes a vacation from his problems.  TV can offer a tiny vacation from your problems. A few minutes to laugh or solve a crime, and forget about that doctors appointment coming up,  or that test you have to take,  or whatever it is that you don’t really want to do.  And, for those of us who aren’t able to physically do much besides reading and surfing the internet, sometimes movies and television are all we have to keep busy.  Well  that,  and writing a blog will keep you pretty busy! 

When I could no longer do things with my kids that required physical movement of any kind,  watching TV was something we could do together. Each week when our favorite programs were on, they would actually come out of their rooms and spend a few minutes with their mother!  Even though they no longer live at home,  we still watch television and movies together.  My oldest daughter and I watch The Middle almost every week.  My youngest daughter and I try to catch up on Grey’s Anatomy most Friday’s when she comes over. 

The same day I received my third confirmation that, yes, I had what doctors considered to be a terminal, incurable, and untreatable disease,  my husband and I went straight to a movie theatre.  Why not, right? We both had the whole day off of work, why waste it being sad and depressed? I had, according to everyone “in the know” (neurologists), at the very least, a couple of years for that.   So, we went to see, There’s Something About Mary.   Definitely the most hilarious movie of 1998. So, when my mind would have normally been devoured by sadness, instead, I smiled and laughed for 119 minutes. Probably the best thing I could have done at the time.  

Now there are probably close to a million channels (okay,  not quite) to choose from,  streaming on Roku, Amazon Fire Stick,  etc..  Although there are way too many shows not worth watching,  there are some really great ones out there too.   You can now watch them anytime.  No more waiting all week,  or even all year to watch the annual showing of holiday programs or movies.   If you are stuck in a bad mood,  or feeling down, a funny movie or sitcom can be just the ticket,  to at least give you a break from the way you are feeling.  The more you can laugh,  the better you will feel.  I  promise.  Laughter  really,  sometimes,  is the best medicine.  So,  try it. The next time you are feeling down,  watch an episode of The Middle,  or find What About Bob on Netflix.   I  guarantee you will feel a little better!