50. Expect To Live

I remember when the neurologist told me that I had ALS and what it was, and what that meant.  He said there was no cure.  I asked how long I had left, he told me that the typical life expectancy was just 2-5 years.  I was in shock and didn’t know what to think, or do, or say.  I remember my first thought was, if I only had a few years left, I was not going to spend them working 40+ hours a week, I was going to spend my time with my kids and my husband, my family. After some time had passed, I remember being extremely angry that this was happening to me. I remember talking to God about how unfair it was to have two children and to be told that I would not be able to see them grow up. The more I talked and the more I thought about it, the angrier I got. Until I found myself telling God, NO! Not really no to God, but no to the doctors predictions about my life expectancy. I don’t mean a, no, I don’t want this to happen kind of no. I mean a, no, that you feel with every fiber of your being. I refused to leave my kids and miss out on everything! From that day on, without even realizing what a difference it would make in my life, I just expected to live! I didn’t think about the typical ALS progression. I spent any spare time reading stories about people who had defied the odds and survived serious, and even terminal, illnesses. I kept the positive attitude going as much as possible by finding other like-minded people who had ALS.  People who also believed that doctors are not always right. Just because they tell you that you have a limited amount of time left to live, doesn’t mean you have to follow their prediction. People not waiting on a cure,  but looking for their own cure.  Trying alternative treatments,  to help slow their progression and prolong their lives.  

Shifting from anticipating death,  to expecting to live,  was a life altering piece of the puzzle in surviving a terminal illness.  It was the most important piece and the first piece in a huge puzzle that I am still working on,  and will never finish.  But,  I feel like I am straying into another topic,  so back to expectations…

Expect to live.  It will be the best thing you ever do.  When you expect to die, you stop planning for the future.  You stop looking forward to things.  You stop living life, and you start just existing.  Existing is not living.  It is not enjoying.  Don’t wait until you feel better to have a fun and full life. Just like you can’t wait until you retire to have fun,  and enjoy life.  Don’t wait until you are healthy.  Live your life and have as much fun as possible.  I’m not saying it will be easy,  you can still have bad days,  and you may not even feel like getting out of bed,  you may not be able to get out of bed, but make the most of every day, every moment.   Fun for me is just leaving the house, and going anywhere,  even Wal-Mart.  Fun can be having my daughter come see me,  or a friend. Fun can be working on my blog.  Find your own definition of fun,  and start enjoying your life now.  Even if you aren’t healthy,  you can still be happy.

One of Dr Phil’s famous quotes comes to mind, “How’s that workin’ out for ya”? Well, going on twenty years later, I would have to say, pretty well!


48. This World Is A Magical Place


This world truly is a magical place to live.   We usually have trouble remembering that.  Life gets in the way of noticing the magic all around you.   I am reminded every day in the summer time.  I hear so many beautiful sounds pouring out of trees that surround my home.  Flowers are blooming everywhere,  berries popping out of the bushes,  and animals wander around my yard.  Summertime is a time of year when it’s just a little bit easier to see the magic of the world.

Look for the magic everyday.  Ask The Universe / God for a surprise in the morning before you get up,  and then just pay attention,  and see what shows up.  I did that this morning,  and less than one hour later,  my mom brought me a container filled with freshly picked black raspberries.  I love black raspberries.   I always receive something when I ask.  Even when I don’t ask,  many times I am surprised with something I like that just shows up out of the blue.

Some people seem to constantly worry that things will go wrong.  It’s easy to get sucked into worrying, with all the news stories about everything bad that has happened that day,  all over the world.  All the commercials about medicines for this and that,  and how many people are suffering from one disease or another.  Then,  the list of horrible side effects of each and every medication that is advertised.  If you’re not feeling good and need to take medicine,  you can expect to feel even worse with one or more side effects.  Bad luck would appear to be around each and every corner!  Instead of believing something bad will happen, expect good things to happen to you.  Expect things to go well in your life,  and more often than not,  they will.

Being in a wheelchair full-time requires lots of planning for every trip,  everywhere you go.  Not just the usual planning,  but extra planning because no matter how people try,  life is not wheelchair accessible!  It really isn’t.  Everywhere I go,  I have to research how accessible it will be, and plan where to park,  make sure there is a ramp to get in, if there will there be a family bathroom,  ect…  But,  when planning isn’t an option,  I find that if I expect things to go well,  they usually do.  Like when we took our trip to Ireland, I was told it may not be very accessible.  I rented an accessible home,  booked accessible hotel rooms (which means different things to different people,  that’s a whole other blog post) and a van big enough for my wheelchair,  but otherwise I couldn’t really plan on too much.  I didn’t know what restaurants would be accessible.  I just expected we would find something.  And,  we did.  My husband would often get out ahead of me to go in and see how hard it would be to get a wheelchair in,  and many times the owner would pull out a board or something we could use to make a ramp for my chair,  or show us a different entrance.  It always worked out.  When we went through a tour of the Waterford Crystal Factory,  the tour guide went out of her way to help,  she made sure people moved out of my way so I could see everything on the tour.  People held doors for us.  Everywhere we went,  things just worked out.  That’s not to say we had a perfect trip.  A vacation without a little drama might be viewed as boring,  and God knows I don’t want to be bored.  So, we arrived in Ireland, long before the car rental place had opened.  So,  we waited and waited.  Then,  we found out that their airport office was not even open,  so we took the shuttle to their office nearby.  Also,  we arrived at the airport,  but half of our luggage did not.  So, we spent our second day there waiting for a call to say that our luggage had been found, and driving back to the airport to pick up our luggage.  But, all in all, Ireland turned out to be one of our best vacations, and one of the most accessible places I’ve ever been.

Magic is all around you,  just pay attention.  Slow down long enough to notice it.  If you are having trouble seeing the magic in your life,  maybe you could start by listening to the song I shared at the beginning of this blog post.  Once it gets stuck in your head,  and it will,  and you find yourself thinking about magic,  you’ll start to notice the magical world you live in!



43. Why?

Why,  oh why are we required to brush all the tangles out of our hair?   If you have short hair,  just skip this part of the blog.  But, if you’ve ever had long hair, can you send me a message and tell me why?  If you are a female, and you had long hair when you were a kid,  then you may remember the torture that you went through when your mother,  or grandmother brushed through your tangled hair!  The pain!  The hours of torture!  All for tangle free hair!  Why?  My mother tried conditioner,  and whatever she could think of,  but the tangles in my long semi straight hair always persisted!  These days,  my hair is quite a bit shorter than when I was a kid,  but it is never tangle free.  I like the way my hair looks when I’ve just had it shampooed (the friend who cuts my hair will be glad to know I didn’t say “washed”),  and I have it scrunched up,  which makes it curl up.  But,  brush it out, and all my beautiful curls go flat.  I don’t have the luxury of shampooing my hair everyday,  or even every other day.  That’s because I can’t do it myself.  I have to rely on someone else to do it,  and I can’t ask them to do it too often.  So,  brush my hair and my hair looks good for one day, two tops.   It hit me,  all of a sudden today,  why do I have to get all the tangles out?  Maybe the hair stylists of the world would disagree,  but I say why not leave the tangles?  I mean,  I get that you don’t want your hair to look like something that resembles a bird’s nest,  but aside from taming the messiness of your hair,  what is the point?  Who made the rule?  I say it’s time we looked at why we do what we do,  and maybe make some changes!

Why are we supposed to eat three meals a day?  Isn’t that what you grew up believing?  I never eat three meals a day.  I haven’t done that since I was a kid.  Once I went to college,  I ate when I wanted to.  Who made that rule?   And, who decides what is appropriate breakfast and dinner food?   Maybe it’s a regional thing.   I know people in Europe often eat a breakfast, with breads and cheese, which we would consider a lunchtime meal.  Why is it wrong to eat eggs and sausage or bacon for dinner,  if the mood strikes you?

What about flowers versus weeds?   I have a huge yard,  and I love the way it looks when it’s filled with little brightly yellow colored flowers.  You might call them weeds because they are dandelions,  but they look like flowers to me.   Who decided they were bad?  I mean,  you can even eat them if you wanted to.   So how can a food also be a weed?

Let’s talk about leaves.  In the Fall,  people spend a lot of money and time to sweep up the leaves that fall into their yard.  Who decided that a leaf free yard was necessary?  My yard is too big to even consider raking,  but even if it weren’t,  I can’t see myself raking leaves.  I believe I read that they are actually good for your yard and act as a mulch for your yard.  But,  maybe that was written by someone trying to get out of raking their yard,  I don’t know.

Why do we go to school for twelve years?  Thirteen to fifteen,  if you add in pre-school and kindergarten.  Why do we have to learn things we may never use,  yet the things we need to know in everyday life,  we must learn from others outside of school,  or figure out on our own?  Like how to manage your money.  How to cook a meal.  How to sew a button on,  change the oil in your car,  check the tire pressure,  how to start fire.  Maybe these are all things you could pay someone else to do for you,  but chances are you will need to be able to do them for yourself at some point in your life,  even if it’s just until you make enough money to pay someone else to do it.  The list of things you won’t learn in school,  but need to know , is almost endless.

How about wearing white after Labor Day.   What kind of crazy rule is that?  And,  wearing black to a funeral?  Don’t even get me started on the whole funeral topic!  That’s a blog post in itself.  I could go on , and on with the list of things we do that, just because everyone does it that way.    Doing things the way you don’t really want to,  just because someone,  somewhere decided that’s how it should be,  can lead to stress and stress leads to things like ulcers and migraines.   Everyone would be better off if they could just do their own thing,  so to speak.   If your way of doing things isn’t going to effect anyone else in a negative way,  then go for it!  Eat pancakes for dinner,  and pizza for breakfast.  Aside from not being the healthiest meal you could choose,  what does it really matter?  Do whatever you want,  and you will feel much better for 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! 

34. You Are What You Think



You’ve heard the saying, “You are what you eat”.  Well, while too many jelly donuts may make your tummy resemble Santa’s, shaking like a bowl full of the stuff, besides watching what food you put in your mouth, you also need  to watch what thoughts you are putting into your mind.  Negative thoughts can affect your body in a negative way, just as much as the food you eat.  I believe this could explain why so many patients who receive a devastating terminal or serious health diagnosis seem to,  many times,  immediately get significantly worse.  Being told that you have cancer and need a horrible treatment,  or that you have a terminal disease,  and only have a few years left,  is a bit unsettling, to say the least.  When negative thoughts  fill our minds,  they can become all that we focus on.  If those negative thoughts are health related,  they can take over,  and become our main focus.  Add to that,  the stress and thought patterns necessary to get through everyday life filled with treatments, doctors, and worsening health,  and it’s a wonder anyone gets better at all.  I believe if doctors could change the way they present the news of an incurable or serious illness to their patients, the recovery and survival rates would skyrocket.  Just letting people know that besides medicine, there are other areas of their lives that can hold the answers to improvement in their health, even something as simple as the thoughts they think,  would make a huge difference in a person’s life.   In the placebo effect,  patients who think they are receiving medication get better when they only received a placebo and no medicine,  because they thought they would get better.  This proves the power that our thoughts hold.  

Author and queen of affirmations, Louise Hay,  said that disease can be reversed by changing your mental patterns.  By eliminating those negative thoughts that automatically play in your head over and over, and replacing them with positive affirmations, you can reverse the patterns that created the disease.  More and more books are being written with similar beliefs.  Philosopher and author, Wayne Dyer, said that when you change the way you look at things,  the things you look at change.  Or, if you change your thoughts, you change your life.  That is true for every aspect of your life,  not only your health.    

I believe that I live in a world filled with mostly good people who are helpful and kind,  with a few bad ones mixed in,  who I almost never run across.  That is exactly what I find to be true.  I run into kind,  helpful people where ever I go.  Does this happen because I believe it is so?

Maybe a little denial isn’t such a bad thing either.  I constantly read blog headlines and personal comments from ALS patients regarding their diagnosis as a death sentence.  While that may be the story they have heard from their doctor,  why let that be your only focus?   I believe if you live with the belief of no hope, and no cure, then that’s what you’ll get.  I truly believe that a big part of why I have survived way past the prognosis of  a 2-5 year life span,  was because I simply refused to believe that was going to happen to me.  Some might say I live in denial, because I believe that no illness is a death sentence, and no situation is hopeless!  As Dr. Phil would say, “How’s that workin’ out for ya?”  My answer is, “Great!” 

The Law of Attraction,  says that whatever you focus on is what you attract to your life.  When you constantly talk about your health problems,  you only attract continued health problems.  If you constantly talk,  or think, about how you have no money,  and how you hate that you have no money,  and you have too many bills,  etc..  You will continue to attract no money,  because that is all you are focused on.  And on, on it goes,  no matter what the topic.  So if you want more money,  or a job that you love,  try not to think about what you don’t have,  and think about what you do want.  Focus on how you would feel if you had lots of money,  or the job of your dreams,  or how you would feel if you could walk again,  or whatever it is that you desire.  Focus on the good stuff and ignore the unwanted bits of your life,  as much as safely possible.  Day dream about what you want to happen in your life,  and soon,  your life will catch up with your dreams.

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.


18. Use The Good China


My mother has a set of china in her china cabinet that I don’t ever remember her using.   I’m sure she must have used it at some point, but I don’t remember ever seeing it out of the cabinet. We all seem to want to save things for a special occasion. But, I guess nothing ever seems special enough. Or maybe we just forget we have that good china because we never use it.

I have a set of real silver flatware that my grandmother gave me years ago.  I use it at every birthday party and every holiday dinner.  I don’t think I own any item that I wouldn’t use,  aside from my great grandfather’s pipe.  It has been well used, but not by me!

Everyone has something they are waiting to use or waiting to do. Waiting until the kids are grown, or the puppy is housebroken. Waiting until they’ve received that promotion, or until retirement. Waiting for something that may never come, or at least not in the near future.  Why wait?

The same goes for indulging. You don’t order the dessert after dinner, because you feel like you really shouldn’t. You buy the kids each a new pair of shoes, but pass on a pair for yourself. Certainly if you are trying to loose weight, you probably want to skip dessert. Or , if you can’t afford another pair of shoes, don’t buy them. But, treat yourself in some way.  Stop saving, stop waiting! Make an ordinary day special by using the good china, and what the heck, use the good silver too! Take that cruise this year. Don’t wait for retirement. And, open that special bottle of champagne even if you don’t get the promotion. Your life is now!

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.