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! 


37. Get Over It

You may find that life doesn’t always cooperate with you and your plans.  You could find yourself in the situation of having someone else do everyday tasks for you.  Whether it is soon,  or when you are old and living in a nursing home.  Anything from helping you eat, to moving your legs to a different position, to styling your hair, picking out your clothes, etcetera.  The list could go on forever.  This is where planning ahead definitely helps. Oh, how I wish I would have given my husband some lessons on hair styling while I was still able to style my hair!  Styling, to him, consists of combing.  That’s it.  Oh, well.  Also lets just say, we have very different ideas about what colors actually go together, or match, or that matching is really important at all.

It won’t take you long to realize that something as simple as brushing your teeth is not that simple, or as straight forward as you would think, when someone else is doing it for you.  The “brusher” may think they are brushing your top teeth, while they may actually be brushing above  your teeth, and hitting only your gums.  Or maybe the toothbrush doesn’t even hit your back teeth, or maybe it’s being rammed down your throat.

I never realized that there was a wrong way to put my arm on an armrest, until I could no longer do it myself. Suddenly, it was hard to get it in just the right place.  No, further up, now out more.  Now, move my hand.  How can something so simple, be so hard? Something that used to take one second suddenly takes minutes.  And, while one person may be excellent at brushing your teeth, they may dump food all over you every time they help you eat.  And, the person best at helping you eat, may never be able to get your arms in just the perfect position.

What does this mean? It means, plan ahead the best you can,  but get used to the idea that life may not always go like you plan it.  You might as well get over that right now.  It’s just the way it is.  No matter what the situation,  you are just going to have to get over it at some point,  the sooner,  the better.  If you buy the winning lottery ticket,  and lose it before you cash it in,  you’re just going to have to get over it.  If someone takes your old laptop because they think you don’t want it anymore,  because you hadn’t been using it.  and they reset it to the factory settings, thus wiping out everything you had on it,  including artwork and an art program that you can no longer reload,  when you actually really did want it.  You will just have to learn to live without it, and get over it.  Even if you really don’t want to.   Or,  some such scenario,  I mean I’m not saying that this actually happened to me (wink, wink), and I’m not naming names or anything.  You get what I mean,  right?

I am proof, that you will survive.  Depending on what you believe,  I am proof that it’s  not good to not get over things…but, that’s a whole other blog post.  I have survived having  food stuck in my teeth for a day or two.  I have survived having my leg in the same uncomfortable position for a long while.  I have survived losing the use of the majority of my muscles.  I have survived having life go way differently than planned.  I may survive losing my computer programs, and artwork, I am not sure about that one yet.   I find it hard to survive wearing non-matching purple pants, a blue sweater, and a Christmas shirt in February.  But, I have done it,  and eventually I’ll get over it!