80. Dog Poop Is Everywhere, Even The Beach

Keep going.  Life might get tough, but keep at it.  I have been lucky enough to be able to keep traveling,  even though I need help in doing absolutely everything.  I even went all the way to Ireland, years ago now, but still when I needed help with everything.  We had an awesome trip, but it was not without a few bumps in the road.  That vacation, like all of the ones I have been on, get better and better, as time goes on.  You tend to forget the crummy bits of your holiday and just remember the good bits.

Having a good time can be hard work.  It’s not all fun and games, but, it’s worth it.   It can be tough.  It is tough on the person who needs help, and tough for the person doing the helping.  I have broken a finger in Florida, and had more than my share of bumps and bruises in many other states.  Currently, my foot is a lovely color of green and yellow, transitioning from blue and purple.  That’s what happens when you try to move a person who cannot move into a toilet located in a closet.  After a week or so, we have almost made it a pain-free task,  and when it’s not, well that’s why God made Vicodin.

Fun isn’t always what it appears to be.  We often look at other people and think they’re having the time of their lives.  We get jealous, and wish our lives could be just as great.  But, looks can be deceiving.  Right now, you may know that I am in sunny Florida, instead of cold and windy Indiana.  Well, that’s true, and it is much, much warmer where I am.  I’m not missing the Indiana winter weather one bit.  When you look at my Facebook posts, I will post the fun stuff, just like everyone else does.  You won’t see my swollen and bruised foot, or that I have my window open, but I am freezing, as usual, and have on a sweater, two blankets and a heating pad.  Of course, my husband has on short sleeves, so I am just always cold.  But, the point is, things may not be what they appear to be.  Life might not be perfect, ever, or fun all the time, but that’s okay.

A friend of mine has a career which allows her to get a glimpse inside many of the big gorgeous, million dollar houses that many of us just drive by.  She said it’s amazing how many of those homes are practically empty inside.  The owners spend all their money on the outside appearances, and have nothing left to spend in decorating the interior.  They don’t worry about that, because no one sees that part of the house.  Things aren’t always as they appear.

Nothing is perfect.  I guess we shouldn’t expect it to be.  Learn to appreciate what you have, or appreciate the good stuff, even though there may be some bad stuff mixed in.  You probably usually think of the beach as a relaxing place to be.  It can be, and it usually is, but besides the sand, and sun on the beach, you will also find dog poop, just like everywhere else.  Just step over it and keep going!

 

 

 

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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!

41. Don’t Stop Thinking About Tomorrow

 

No matter what you are dealing with in your life,  money issues,  or health problems,  etc…   For those of you who had young children at the time you started on your series of unfortunate events (any Lemony Snicket fans out there), they probably provided you with all the reason you needed to fight the good fight.  Even if, like me, you had young children when you were diagnosed, you need to continue to find that energy and will to keep going as your children get older.  Those with children might be able to look forward to years with grandchildren.  But until then,  what will you do to stay busy and look forward to the future? 

It’s important to stay involved in life.  Find something to look forward to.  Whether it’s your child’s graduation day, watching a grandchild grow up, the next time your roses bloom, or just the next season of Orange Is The New Black, or Grey’s Anatomy (I could go on forever here).  Find something to look forward to, something you don’t want to miss.

Even though I, quite literally, almost can’t move a muscle (okay I admit, I can bend my thumb on my right hand), if it weren’t for me, many things wouldn’t get done around my house.  Even though I can’t physically do much,  I do a lot.  I can pretty much guarantee that the sheets on the bed would rarely be changed,  if I didn’t ask someone to do it.  No one would get a Christmas or birthday gift (well, maybe cash).  I am the one who pays all of our bills, online.  I also communicate with teachers, doctors, friends,  and family, with the help of my Tobii eyegaze computer system (Thanks Team Gleason).   I have hired housekeepers, online.  I make sure we don’t run out of toilet paper, and have food in the house.  I make travel arrangements.  I planned an entire trip to Ireland all online.  I garden and decorate my home.  Or, at least I get one of my unpaid children to do it.  I once organized (with some awesome  benefactors),  and raised money for a trip for a young Facebook friend of mine with ALS, to go to an IndyCar race in Long Beach.  I started this blog.  I could go on and on.  I find ways to stay involved with life, and find enjoyment in it,  no matter what health problems I might have. 

If you are going to have a reason to keep going, you are going to have to listen to your heart.  You need to enjoy life and have a passion to live it.  Life is all about having fun!  No one teaches you that in school.   If you aren’t having fun, sorry,  but you are doing it wrong.  For me, as my children got older and less of my time was spent concentrating on them, I was led to start writing down my thoughts.  A friend of mine, Sarah Ezekiel, was led to create beautiful artwork with only the use of her eyegaze computer system.  Whatever you find you have a passion for, go for it!   It only matters that you enjoy doing it.  You may find that your singing will make a baby cry, but if you enjoy it, go for it,  hit the karaoke club!  Just find something to keep yourself involved in life and thinking about and planning for tomorrow! 

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.

 Invictus

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!