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! 

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14. Thank God For Shonda Rhimes  

Find something to look forward to, a reason to get out of bed in the morning.  It can be literally anything.  It can be easier to keep yourself going through the hard days if you have something to look forward to, something you want to do or see.  Something you don’t want to miss out on. 

For me, the biggest thing has been my kids. When a doctor told me I had only a few years left to be with my family, I said, no (in my mind).  I didn’t want to miss out on seeing my kids grow up.  I just kept planning and looking forward to our lives like usual, only more so.

But it’s not just the big things that keep you going, it’s the little things too.  Like planning on taking a vacation.  Or maybe something as small as a new coffee frappuccino coming out at Starbucks next month.  Something to actively plan for and look forward to.  

My daughter got me to read one of the Harry Potter books, and that instantly gave me another thing to look forward to.  I couldn’t wait to read the next book in the series, and the next, and the next, until I had read them all.  And then there were the films based on the books to see and to look forward to.  My ALS just had to slow down because I wasn’t going anywhere until I had seen all of the Harry Potter movies!  I saw them all.  That’s when the Powers That Be/God, lead me to Shonda Rhimes.  Also known as the creator of some of the best shows on TV, and you guessed it, another reason for me to hang in there for one more season of, “How To Get Away With Murder “, “Scandal “, and “Grey’s Anatomy”.  I’m not gonna miss out on what happens with Merideth Grey because of ALS!  Ok, I am not saying that all you have to do to keep going when dealing with a serious illness is to find something to look forward to …but, focusing on something besides your illness is a huge piece in the puzzle.  I am looking forward to seeing  Alice Cooper in concert this summer, I don’t want to miss that.  And on and on it goes.  I am just going to keep on keeping on, and finding new things, both big and small, to look forward to for as long as I possibly can.