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.


46. Do Nothing

At some point you have probably said,  or thought,  that you wished you had a day to just sit and do nothing.  What you really mean,  is to be able to do whatever you want,  not actually nothing.  Doing nothing is a lot harder than you would think.  I do a lot of nothing.  ALS and nothing go hand in hand.

I am currently on vacation, traveling out West in our motor home. Riding in the motor home or a car for me, means a lot of sitting,  not moving at all, and basically doing nothing.  I can’t scroll through Facebook,  no eating or drinking.  No reading a book.  Nothing. Well, with a lot of planning and time spent to set things up, I could probably use my phone, or read, but it hasn’t happened yet. Things are especially arduous when riding in the motor home, because the driver and passenger seats are so far apart.  There is no way my husband can reach me to help with anything when he is driving. If hair blows into my face,  it stays there.  If I get thirsty, I have to wait until we stop. If a bug lands on me, it stays there until it decides to move. There also isn’t much talking going on. Between the noise of the road, my quiet voice and my husbands hearing loss, there’s no chance of a conversation. That being said, I generally do like our motor home. I have found that if I have some music (that I like)  to listen to, I can sit just doing nothing besides listening to the music, for hours on end. Music helps the hours spent doing nothing while my husband is driving, fly by.

I did a lot of nothing when I was young, walking through the woods and fields around my house. I could wander around for hours with my dog doing nothing.

Many people meditate to take a break and do nothing. My dog seems to be quite good at doing nothing. He’s happy to do very little too. It seems much easier for animals to do nothing than for people. I remember when I was a teenager, trying to lay out in the sun to get a tan. There wasn’t much chance of that happening. After about ten minutes, I had to get up and do something, I was bored.

Quieting your mind and doing nothing is good for you in many different ways. It helps your body and mind, as well as your soul. So, do what you can to practice doing nothing as often as you can. You don’t have to buy a motorhome and go on vacation, to do nothing, but I would definitely recommend it!

40. Life Is Good

Life is good.  My life is pretty great,  except for that bothersome ALS  thing.  I have a wonderful husband,  who I’ve known for over half my life.  I have two great daughters,  and their boyfriends are awesome.  I have great families all in all, on all sides.  Not perfect,  but mostly great.

Life is good.  I always have enough money to do whatever I want (well, within reason).  And,  if I don’t have the money I need,  the Universe sends some my way in cash, or through some other means.  I mean, I doubt I could ever afford a mansion or a yacht or anything, but lucky for me, I don’t really want one.

Life is good.  I’ve inherited an appreciation for all things from Mother Nature.  Including everything with no more than four legs (eek!).  My grandfather was an excellent gardener,  and grew beautiful roses.   I would work in my yard/garden every day,  if I could.

Life is good.  Luckily I inherited an appreciation for the arts (both art and music),  and some artistic ability,  from both sides of my family.   I have a great-uncle who is a wonderful artist,  and who actually began a college of art.  He once owned one of the largest looms in existence,  and was going to give it to me,  but I had no room large enough for it!   I have famous musicians in my family.  They are awesome and I would say that at least one of them is maybe a little eccentric,  as most musicians are, which makes them even more cool.  I strive to be unique.  I hope one day someone,  somewhere will say, “Oh yea,  I remember her,  she’s sort of eccentric.”

Life is good.  My husband and I are at a point in our lives where we just do what we want.  We recently bought an RV,  and are going to start traveling anywhere and everywhere we can drive.  We started with a trip out West last year,  and we’re heading back there soon again this year.

That’s not to say that I don’t have bad days,  or that things don’t go wrong in my life.  If one thing,  like a furnace quits,  you can bet something else will quit too.  Recently,  our generator on the RV quit,  causing the cancellation of a month-long trip to Florida.  Soon after that our furnace quit,  and the transmission on the truck started giving out.  Everything all at once!  But,  I find something to be grateful for, and move on.  This time,  I was grateful that we were not in Florida when our furnace gave out in the middle of the winter.  It would’ve been disastrous to be gone,  probably returning to broken water pipes, and who knows what else.  We also happened to avoid some nasty tornadoes that hit the town in Georgia which we had planned to stay in on our way back from Florida.  Someone was looking out for us!  I think someone,  or a lot of someone’s,  know that I need all the help I can get,  and make sure I get it!

Life can be good,  no matter what is happening to you!  Nelson Mandela spent years in prison,  but managed to remain as content as he possibly could.  This poem by William Earnest Henley,  helped him face each new day with strength.


Out of the night that covers me, 
      Black as the pit from pole to pole, 
I thank whatever gods may be 
      For my unconquerable soul. 
In the fell clutch of circumstance 
      I have not winced nor cried aloud. 
Under the bludgeonings of chance 
      My head is bloody, but unbowed.  
Beyond this place of wrath and tears 
      Looms but the Horror of the shade, 
And yet the menace of the years 
      Finds and shall find me unafraid.
It matters not how strait the gate, 
      How charged with punishments the scroll, 
I am the master of my fate, 
      I am the captain of my soul. 

If you can forget about your problems for even a few seconds,  you will feel much better.  If you can forget for a few seconds,  you can change your outlook and your reaction.

“It’s not what happens to you, but how you react to it that matters.” – Epictetus

If you need a little push in the direction of happiness,  you can always listen to a great song.  You can’t help but smile and forget about your problems for at least a couple of minutes,  when The Muppets from Sesame Street and The Roots are singing a song!  Life is good!


29. Anything Can Happen

Happy New Year!  I am excited for the New Year,  and all of the surprises it holds in store for me.  Anything can happen!  I know that could frighten some people,  knowing that anything can happen.  But,  I prefer to be excited to know that anything is possible.  Even the seemingly bad stuff, leads to more great stuff.  Because nothing happens “to” us,  it happens “for” us.  At least that’s the way it works in my world,  I don’t know about yours.

At this time of year,  I normally get a little down,  and cabin fever begins to set in as the cold days pass and I have been stuck inside the house unable to get out in the cold weather.  But,  this year I have switched things up,  and made the decision to spend my days sitting in my chaise in the family room full of windows instead of the computer room /office with only one window.  Wow,  what a difference that makes.  Well,  that and the fact that it is so cold out,  I really want to stay inside!  This year,  we have  decided to skip part of this year’s cold winter,  and spend part of it in Florida and Georgia.  So,  I am very excited about that!  That should take care of any cabin fever issues!

You never know what the year will have in store. This time last year,  I would have never guessed that we would have been able to purchase an RV,  but  we did,  and that will make it possible for this year’s trip to Florida.  I also wouldn’t have guessed that I would spend 4 weeks  of the year traveling through the US,  and Canada,  but we did.    The year is full of possibilities.  Like the song says,  Anything can happen,  if you let it.  Last year,  I wouldn’t have thought about spending my days sitting around in my pj’s.  But,  driving in our RV for days at a time, I skipped getting dressed a few times,  when I knew I wouldn’t be leaving the RV.  I just threw a sweater over my pj’s.   And this winter, as  I looked at my clothes,  knowing that I would not be going out anywhere in this super cold weather,  I suddenly wondered why I was getting dressed at all?  I mean,  I wasn’t going to see anyone (except family),  and I wasn’t even moving out of my chaise.  So,  why not be comfortable and warm?  Thankfully I have enough fleece pajamas to spend days at a time  in comfortable pj’s.  Don’t worry,   I have not gone over to the dark side.  I am not about to show up at Walmart this summer in my pajama pants,  even though that seems to be acceptable these days!  But,  if you show up at my house unannounced,  you will find me in pajamas.

So,  be excited about the New Year,  and all that  it holds for you!  You may just find yourself riding around in an RV,  in your pajamas.

24. It’s All About The Journey

This blog post is dedicated to my Facebook friend, and ALS warrior, Tammy.  May you be joyful as you continue on your journey,  no matter where it takes you.


Last month,  my husband and I traveled West in our new(ish)  RV.  We made a stop in Missouri,  then on one side of Kansas,  then the other side of Kansas,  then Colorado,  and finally,  New Mexico.  Then back home through Texas,  Oklahoma,  Missouri, and finally arriving in Indiana.  It was an adventure.  It was our first trip in the RV,  being the second owners,  so we found things we wanted to change,  and a few things we have to fix.  We had a travel trailer years ago,  so it was not all totally new to us,  but it was all new to our 95+lb., five year old Lab mix dog who we took with us.  He adjusted fairly well,  and loved his new bed,  and all the vacation food,  but  he preferred to squeeze into the 12 inch space beside the bed to sleep,  instead of his spacious  and comfy bed.  It was quite a sight.

We probably should have taken a shorter trip for the first trip out.  That way we wouldn’t have been clear across the country when we realized that we needed to order a new converter (don’t ask me what that is,  but apparently it’s very important).  But,  we did have an adventure!  It’s just that adventures aren’t always great,  amazing trips without a single problem.   We had to cut our trip short and come home early.  So our adventure  ended up being more about the journey, and less about the destination.   But,  isn’t that how it should be?   Isn’t that just life?  I had always wanted to visit New Mexico, so that was the end goal.   So many people plan on reaching some sort of goal and they are sure they will find enjoyment in the achievement of that goal,  like a new home,  or retirement.  But,  they end up just working themselves  into a serious illness,  or to death trying to achieve their goals,  planning to be happy one day in the future,   instead of just enjoying the journey and finding happiness in the every day.   I used to do the same thing,  until ALS woke me up and made me start paying attention to the journey and not just the destination.  Because you never really get to your destination.  You may achieve a goal,  but then,  don’t you just have another goal to achieve  (hopefully)?  And another?  And another,  and so on and so on, and it never really ends. I would say that even at death,  it is about the journey, because your trip has not ended, but just continues on in another dimension (otherwise known as  Heaven).  We usually refer to death as an ending.  But,  I know that we are really just living somewhere else.  There is no ending,  just the journey.  Many,  many religions believe that you take many journeys through more than one lifetime.  I am apt to believe this,  because how can a person accomplish anything in just one short lifetime?  I have trouble believing that God only gives you between one and one hundred short years to experience life in the vast amount of time of Earth’s existence, but… that’s a whole other blog post!  Do whatever you can to find enjoyment on your journey,  and don’t worry so much about your destination.  Enjoy each and every day.


23. Shake It Up


A popular song in the 1980’s,  by The Cars. Even if it’s just a song about dancing, it reminds me to shake up my life.  Whether we like it or not, life is all about change and shaking things up.  I was pretty happy with my life, just going along with my routines that are easy to get stuck in,  and necessary when you have children and a job, when BOOM…ALS shook up my life.  One thing about living with ALS, is that it causes constant changes in your life.  You are forced to adapt to the changes with the loss of each and every muscle.  I am still trying to accept that my life is constantly changing.  I am not sure why most of us have so much trouble accepting change.  Maybe because we usually view change as a negative thing.  But even a negative change can bring further positive changes.  If I had not been diagnosed with ALS,  I would have probably never cut back my full time job to working part time, even though that’s what I always wanted to do.   And,  probably never would have quit working all together.  I would have probably never taken so many wonderful vacations with my family either.  We would not have moved into a new house.  I would have never met the same people I have met in the past 19 years.  The list goes on and on

My husband and I recently purchased a new(ish) RV.  Being able to take long trips in the RV  will really shakeup our routine.  My new(ish)  blog really shook things up!  Shake things up, even if it’s in a small way.  I recently started spending more of my days sitting on my chaise in the family room using my iPhone, rather than sitting in my wheelchair in the computer room using my computer.  That small change has made my body more comfortable, given me a better view of the outdoors,  so I can spend more time bird watching and less time surfing the internet.   Do whatever you can to shake things up,  and learn to accept change and view it as a good thing.