33. True Love -or- Watch Out For Blind Dates

One fateful evening,  many years ago,  my grandmother went out on a blind date with a man who would be my grandfather.   They were together for many,  many years after that night.  Married for 60+ years.  It’s a long story,  but my parents got together as result of blind date (not theirs)  also.    Similarly,  I was fixed up on a blind date by a friend,  with a guy who had just returned home after being in the army.  That was going on 33 years ago,  and we have been apart little since that fateful night.  True love.

When you think of Valentine’s Day,  and true love,  flowers and candy probably come to mind.  Maybe a night out with your significant other.  But,  I think of someone who does literally anything and everything I need help with,  and buys me flowers to boot!  You know it’s true love,  when you are diagnosed with not just a serious disease,  but one known as one of the worst you can have with no cure,  and your spouse (or significant other)  stays by your side to help you through it.  Not just sticking with me,   but also going along in my quest for better health.  Never letting me give up on getting better,  and taking me wherever that journey leads us (which has been all over the U.S. ),  both when he believes in that particular part of the quest, and even when he does not.  Helping me eat dinner since I can’t lift my arms to feed myself.   Getting up at 3 a.m. to get me a drink and a pain pill,  because I can’t get up myself.   Helping me with all personal care,  including bathing,  going to the restroom,  and getting dressed.  Doing the laundry,  walking the dog,  making dinner, or buying whatever I want for dinner,  and on, and on it goes.  He helps the kids with car maintenance, and home repairs.  Did I forget to mention how he seems to be able to fix anything,  which saved us a ton of money over the years?  That has nothing to do with love,  but just shows that the Universe gave me a bonus on top of the true love it sent me!

True love,  is my husband staying up all night (when he had already only had a nap in the previous 24 hours) to work on getting the gas fireplace fixed, and making sure I could sleep and keep warm when both the fireplace and the furnace quit working on a frigid winter’s night.

We no longer have a Starbucks anywhere near where we live,  so it is always a treat to get a coffee or frappuccino. Whenever my husband has to go pick up something anywhere near a Starbucks,  I end up getting a coffee.  Even when he is going to a doctor’s appointment,  I get a coffee.  True love.

True love.  I remember when our youngest daughter was sick,  and about to toss her cookies right onto our new couch.  Without a second thought,  my husband put his hands out to catch those “cookies”,  and save our new couch!  True love,  or was it just the fact that hands wash easier than the couch upholstery?  I don’t know,  but I don’t think I would have done it!

True love.  When you are six months pregnant,  and you haven’t been able to “go” for a very long time,  and the doctor suggests an enema,  helping you get that done is definitely true love.

It’s a little thing,  but I almost always get to decide what we watch on TV.  I usually do try to pick shows that I know my husband will like.  When we make big purchases,  like cars,  houses,  and maybe furniture, we usually do that together.  But,  when it comes to the smaller things,  like decorating the house,  it’s all me.  Anything I want,  I just buy it.    It’s not unheard of for my husband to come home and find that a room has been painted a different color,  or we have new curtains in the living room. He just lets me do whatever I want.  Which has gotten trickier over the years,  after I lost the ability to “do”  things on my own.

Now, before you all get too worked up,  I will remind you that I didn’t say that my knight in shining armour did all of this happily all of the time.  Especially if it is 3 o’clock in the morning,  and I’ve already woken him up three other times.   He will not be happy.  But,  he gets up and does it anyway.  Also, when he says he will be there in, “a minute”, I can count on waiting anywhere from an actual minute, to five or ten minutes. And, “stuff”  happens,  when you aren’t doing things for yourself.   Like when someone else is scratching your  leg,  and they accidentally take a bit of skin off whilst relieving the itch.  Or,  they can’t tell how far they are pushing the toothbrush into your mouth,  and gag you shoving it down your throat!   Or, when they try to  remove the  hair out of your eye,  but also rip ten other strands of hair out of your head.  Then there are the bumps and bruises, because when you are just one person helping someone who can’t move at all,   it’s hard to keep fingers and toes from getting mashed or bent in a way they don’t bend.   And on,  and on it goes,  as you can imagine.  But, so far,  only one broken finger.  Probably not a bad record for over 20 years of care.  Maybe that’s the real reason babies cry so much?   We all might just not do as well as we think we do taking care of another person,  so we are the reason they are screaming when we take care of them?  Hmmm,  could be… but,  I digress.

True love is not just about romantic love.  True love can also be love between a parent and their child.  Pure love.  If you have ever had a pet,  you have felt true love.  True love is not made up of chocolate and flowers,  it’s made of tougher stuff.  It’s made up of nights without sleep,  and all the things you would never do for anyone else,  but you would for your “true love”.

I think The Beatles were spot on when they sang, “All You Need Is Love”. Life may not be a bed of roses,  but you can do anything and get through anything if you have any form of true love in your life.

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32. Find Inspiration

I think I have mentioned before,  that I went to see a psychic not long after I was diagnosed with ALS.  I hadn’t planned to,  it was just a spur of the moment thing.  In my visit with the psychic, she told me she thought maybe I’d go back to school, because she saw me with lots of books.  Well, she definitely got the book part right, the school part, no thanks!  Not long after my diagnosis, I started searching for answers.  I wasn’t sure what I was looking for,  but the doctors didn’t seem to have any answers,  so I started searching for myself.  So, I started reading,  and reading,  and reading.   Everything from novels, to inspirational biographies, to books filled with spiritual wisdom, and everything in between.  Although I have definitely slowed down the pace, I’m still not done.  The more I read, the more I find that I want to read.  It all started with a little book called,  Heal Thyself,  by White Eagle.   That book led to more books by the same author,  which led to books by and about Sir Arthur Conan Doyle… but,  that’s a whole other blog post!  

I also discovered Oprah!  She had just started doing weekly shows with guests that were somehow inspiring.  She was a wealth of inspiration and information.  With nearly every guest came another list of books I wanted to read, and many of those guests had websites, where I found more inspiration.  Now that Oprah has her OWN network, I find inspiration through many of her programs,  but especially on Super Soul Sunday,  and Master Class.  Of  course there is an unlimited amount of inspiration on the internet.  Through people like Jason Becker, an amazing musician who is living with ALS, and is still creating music.  Or, my friend Sarah Ezekiel, an artist who creates all her pieces with a computer eyegaze program, because she is living with ALS.  Or,  my friend Father Sophronios from Greece.   He is a Monk who is living through faith and inspires others with his writings about his experiences in living with ALS. 

Inspiration is all around us. Inspiration to survive any hardship,  to lose weight,  to go through a divorce,  to survive losing a loved one,  to live a better life.  There is inspiration for absolutely any situation you are going through.  Find what inspires you and gives you hope.  Once you find it,  share it with others.  Be the light for someone else’s path,  and you will find the light on your own path is even brighter.  

31. He Who Must Not Be Named

 

Words are powerful.   We have to make sure we give power to the right words in our life.  If you know anything about the Harry Potter book and movie series, you may know that there is a wizard who other witches and wizards are so fearful of, that they won’t even speak his name.  Harry Potter is often scolded by his teachers for daring to utter the name, Voldemort.  They fear the power held by the name when spoken aloud.  Harry is always quick to point out that he isn’t afraid to say his name.  Harry believes that by not saying the name Voldemort, they are giving Voldemort even more power.

I think Harry was spot on.  Too many times have I felt the fear cast by the words, Amyotrophic Lateral Sclerosis (say that fast,  ten times),  or ALS.   It is referred to as one of the worst diagnoses you can receive.  One of the worst diseases you can have.  Hearing ALS referred to in this way, over and over again gives the name a power over you that it should not have.   

I, like Harry Potter, think that people give way too much power to the name of a disease. Think of Cancer, for instance.  When you find out that someone you know has been diagnosed with it, upon hearing the word, Cancer, don’t you immediately get a sick feeling in your heart, or maybe the pit of your stomach?  That is the power and the fear held by the word, Cancer.  Power that would be much better off placed elsewhere.  Power and energy you could be using to get over, or through, your illness.  Don’t give your illness or disease any more power than it deserves.  Don’t be afraid of the name and all that the name entails.  You will be ahead to actually forget about whatever it is that you’re dealing with (as much as safety possible) ,  and just go on with your life as normally as you possibly can.  

Any negative word can hold a type of power over us.  These words can make us feel doomed,  like we have no chance of success.  If you believe you will fail at something before you even attempt it,  chances are you will fail.   But,  if negative words can hold power,  so can positive words.  If you believe that you will achieve your goal,  just believing it will go a long way in making it happen.  Pay attention to the words and the stories that are running through your mind,  often non-stop.  Are they positive messages of health and happiness,  or are you constantly worried about test results and thinking of the aches and pains you have?  Maybe not just the stories in your mind,  but the stories and the words you use to tell others about your life.  When someone asks how you are,  what is your first response?  Do you tell them about how bad you feel,  or about whatever bad thing just happened to you?  Or,  do you talk about the good things that recently happened in your life?  

Is your glass half empty,  or half full?  Some days it may be hard enough just to find your glass,  I know,  been there,  done that.  But,  try not spend too much time focusing on the negative.  Try to give more power to the positives in your life.  It really can make a huge difference.   Make every story floating through your mind,  one that you would be willing to put in your yearly Christmas newsletter.  You know,  those often funny and maybe annoying letters people like to add into their Christmas cards to let you know how great their lives and their families lives are going.  You rarely read anything negative in those letters.  Somehow the people in those letters never have anything bad happen in an entire year!  So, go for it!  Focus on the positive,  and just skip over anything bad that happened.  Give power to the positive words and stories of your life!  Try to make every day a Christmas newsletter day! 

30. Half A Stick Of Gum Is All You Need

Half of a stick of gum is all you need.  When I was a kid,  whenever I visited my grandparents, to keep us occupied during church, my grandmother would give my sister and I a piece of gum.  But, only one half of a stick of gum.  Even for a kid, that’s not much.  That’s plenty, she would say. 

I have found that there are a lot of things,  like that half stick of gum, that  I was used to having which, I have realized I can get by without.  I found out,  with ALS,  that it’s amazing how much muscle you can lose,  and still live a somewhat normal life.  I was walking around,  doing everything I always did for years with a great deal of muscle loss.  I got by with much less than I thought I needed.

I had one of the original big bulky bag cell phones,  back in the day.  I had it mainly to use in case there were an emergency,  like if my car quit,  because I drove 40 minutes to and and from work everyday.   So, after I had to quit working due to my health issues, I just never got another phone.  I  went for years without having or using one.  Which means I had also never texted, other than from a computer. And, I lived to tell the story!  I found I could survive without one.  I finally got a new cell phone last year,  after  15+ years without one. 

I could never have imagined sitting in one spot and not moving for an hour or even two hours before ALS.  Sure, we all say, “I wish I could just sit and do nothing!”  What we really mean is we wish we didn’t  have to go to work, or do any of our daily chores, but moving about would still be an option.  What about when moving isn’t an option?  I’ve found it really is possible  to sit and literally not move,  without going totally crazy.  Even a couple of years ago,  I was used to  asking one of my daughters help move my leg or arm after an hour of not moving.  But, when that was no longer an option, I found I could survive moving  less often than I had thought.

I used to always be on the go.  Now,  leaving the house numerous times every day is just a distant memory.  I could never have imagined staying in for days, let alone weeks at a time without leaving the house.  Now that seems totally normal,  and rarely bothers me at all.  It helps that most of those periods of time occur during the winter, when just the thought of the cold Indiana weather is enough to make my body ache,  and all I want to do is stay in and stay warm.   I have experienced cabin fever first hand, but I’ve also learned that you really don’t need to leave the house everyday, every week, or even every month to be content.  

We all find ourselves thinking about the things we think we need.  The latest model  TV,  or newly released IPhone or IPad.  Whatever it is,  it may be something we want,  but usually we can definitely do just fine without it.  I’m glad I learned early on,  that you don’t always need as much of something as you think you do to be happy.  Sometimes half a stick of gum really is plenty.

 

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.

28. Believe

Believe.  A popular sentiment this time of year.  I do,  Believe.  I believe in the magic of the Christmas 🎄 season.  I believe all year long.  I know that the world is a much more magical place than we give it credit for being.  The magic of The Universe is always there,  if you just believe.

There is a book called Fairy Faith In Celtic Countries,  that talks about the belief in magical creatures like Fairies and Elves,  in Celtic countries.  The stories were gathered by the author who went around the country side at the end of the 19th century,  talking to older citizens of small towns.  He heard stories of things,  magical things that happened to these people,  or to their parents or grandparents.  Back when people believed in the magic of the world.  I read it years ago.  It’s a wonderful book, if you want some proof that magical things just might be real.

I know a person who Believes so strongly, that miracles happen in his life on a daily basis!  Big miracles.  Miracles,  like someone showing up and offering their services to care for him,  a person who has ALS,  when he  had no idea where he was going to find the help he needed.  Then,  another person came into his life,  to care for him.  Oh,  and I might mention that his body is healing itself.  I don’t mean the scrape on his knee is healing itself ,  I mean he can hold his head up after years of not being able to do that due to ALS.  He can take a breath on his own after years on a ventilator!  Really huge miracles!  Miracles are happening so bigly (that’s a word now,  right?) in his life,  he is writing a book about it.  I can’t wait to read it!

Miracles are right there just waiting for you to believe in  them,  so they can appear before your eyes.  There’s even a book written called,  A Course in Miracles.  It’s what I would call,  a very “woo – woo”,  deep sort of book.  Maybe not for the beginner who is not so sure about miracles.  On the other hand,  Pam Grout ( who,  if you read my blog, you know  I love , love) wrote a series of books called E-SquaredE-Cubed,  and Thank and Grow Rich,  all about the miracles that are just waiting for you.  All with easy to do experiments that allow the Universe to prove to you that it’s there and just waiting  for you to Believe.

If you have seen the movie, City Slickers,  you might remember how Curly talked about the secret of the Universe being just one thing.  Well,  I think that secret is simply to Believe.  To believe that absolutely anything is not only possible,  but probable.  Believe in ,  Matthew 21:22 – “And all things, whatsoever ye shall ask in prayer, believing, ye shall receive”.   I think it is the ancient secret of Alchemists,  and how the Egyptians built the pyramids,  and how everything that seems impossible is somehow possible.  Okay,  I’m guessing the Egyptians had a few other tools other just belief,  but you get what I mean,  right?  Somewhere along the road between the time when Egyptians built the pyramids, and Alchemists were walking the streets of every town,  we lost that magic.  But,  every Christmas season we are reminded that magic and miracles exist.  We are reminded that miracles happen on a daily basis.  I am reminded that every day that I wake up is a miracle for me,  because many doctors  (not mine),  believe that people don’t live for years and years with ALS.  Much of the time,  that is true.  But, I believed it didn’t have to be true, and Believing is a big part of making it so.

My wish,  is that everyone who reads this, will try to hold onto some of that Christmas spirit, the magic of Christmas, and let it extend past Christmas time and into the New Year. Greet each new day with the same excitement,  hope,  and Belief,  that you feel during this time of year,  all year through!

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27. Find Some Hope to Hold Onto

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson

I had a great-uncle who was a postman.  He also happened to be a  healer and psychic.   I remember him and the wonderful conversations we used to have.   When I was very young,  somewhere between four and six years old,  we would sit in my aunt and uncle’s kitchen,  eat cookies and just talk.  It seemed very odd to have an adult sit and just talk to me and be so interested in what I had to say.  I loved to talk to him.  

One day,  a full year after I had been diagnosed with ALS,  I decided to look him up.  I hadn’t seen him in years.  He lived in a small community of psychics, healers, and mediums called,  Camp Chesterfield.   One weekend,  my mother and I found his address and drove over to see him,  but he wasn’t home.   So,  we visited the local bookstore, and the community office where I was given a list of all residents and their gifts (psychic, healer, medium, etc).  Since I was already there,  I thought I might as well try and get a reading.   So,  I had the office secretary call a lady listed as a psychic and medium to see if she had time for one.   She did.  I had never been to a psychic before, but it turned out to be exactly what I needed at the time.  She told me, among many other things,  that she had a message from my former pastor.   She wanted to tell me that my illness was just something I had to go through.  After months of tests, doctors, and doom and gloom, those few words were such a comfort and source of hope.  I just had to go through it… to me,  meaning there was hope of getting through it,  or living with it.   Reverend Clara Maye Rippel always knew the right thing to say!

I will never understand  why some medical professionals are afraid to offer what they call, “false hope”.   Hope can never be false. Sometimes all you need is a little hope to make a huge change in your life.  There are stories out there about someone who has survived every illness, and every terrible situation you can imagine.  If someone else can survive what you are going through, or worse, then you can too.  

 

26. Laugh. Even if you don’t feel like it.

 

Who says TV is bad for you?  I know I heard that somewhere.  Maybe it was just sitting too close to the television set that I was warned about?  Anyway, contrary to popular belief, I think television and movies can be good for you.  In the movie, What About Bob, Bob takes a vacation from his problems.  TV can offer a tiny vacation from your problems. A few minutes to laugh or solve a crime, and forget about that doctors appointment coming up,  or that test you have to take,  or whatever it is that you don’t really want to do.  And, for those of us who aren’t able to physically do much besides reading and surfing the internet, sometimes movies and television are all we have to keep busy.  Well  that,  and writing a blog will keep you pretty busy! 

When I could no longer do things with my kids that required physical movement of any kind,  watching TV was something we could do together. Each week when our favorite programs were on, they would actually come out of their rooms and spend a few minutes with their mother!  Even though they no longer live at home,  we still watch television and movies together.  My oldest daughter and I watch The Middle almost every week.  My youngest daughter and I try to catch up on Grey’s Anatomy most Friday’s when she comes over. 

The same day I received my third confirmation that, yes, I had what doctors considered to be a terminal, incurable, and untreatable disease,  my husband and I went straight to a movie theatre.  Why not, right? We both had the whole day off of work, why waste it being sad and depressed? I had, according to everyone “in the know” (neurologists), at the very least, a couple of years for that.   So, we went to see, There’s Something About Mary.   Definitely the most hilarious movie of 1998. So, when my mind would have normally been devoured by sadness, instead, I smiled and laughed for 119 minutes. Probably the best thing I could have done at the time.  

Now there are probably close to a million channels (okay,  not quite) to choose from,  streaming on Roku, Amazon Fire Stick,  etc..  Although there are way too many shows not worth watching,  there are some really great ones out there too.   You can now watch them anytime.  No more waiting all week,  or even all year to watch the annual showing of holiday programs or movies.   If you are stuck in a bad mood,  or feeling down, a funny movie or sitcom can be just the ticket,  to at least give you a break from the way you are feeling.  The more you can laugh,  the better you will feel.  I  promise.  Laughter  really,  sometimes,  is the best medicine.  So,  try it. The next time you are feeling down,  watch an episode of The Middle,  or find What About Bob on Netflix.   I  guarantee you will feel a little better!

25. You Are Never Alone

I have a beautiful wooden clock that my grandmother gave me,  that was made by my grandfather.  It was a kit,  I’m sure.  A mantle clock,  one that you have to wind once a week to keep it going. It chimes on the quarter hour.  I love it,  because of who made it,  and the memories it holds.  I am not the best at keeping it wound.  Since I can’t do it myself (you know,  because of the whole ALS thing) ,  I have to remember to have someone else wind it for me,  and since I often forget,  this also means setting the clock.   You are supposed to set it by stopping every fifteen minutes to allow it to chime,  and then continue on until you reach the correct time.  This rarely happens.  Or,  one of the three spots it needs wound will remain unwound,  there’s always something,  and the clock gets off kilter and chimes the wrong number of times when it chimes,  or just doesn’t chime at all.  It may be two o’clock,  and my clock will chime ten times,  because we have screwed it up,  and it thinks it’s ten  o’clock.  Or,  it is quarter after the hour,  and my clock chimes as if it is half past the hour.  You get the idea.

I love clocks.  I have four in my family room alone.  I have another mantle clock that is much older,  from the late nineteenth century, and it also must be wound to keep time.  It chimes on the hour and half hour.  I have had it worked on,  and it keeps perfect time.  If you wind it properly.  We rarely do.  So,  as you might guess,  it is rarely chiming the correct number of times to match the hour it reads.  It is a real pain to reset a clock like this to get it chiming two times at two o’clock,  and three times at three o’clock,  etc…  But,  I noticed something odd not long after I started using my grandfather’s clock.  No matter how much we screw it up,  it somehow resets itself.  It may be midnight and it will  chime as if it is only 5:30,  because we finally wound it after days of letting it wind down.  And,  by the time I notice it chiming the next day, it has somehow corrected itself.  Weird.  Right?  There really is no explanation for it.  But,  I find myself , when it gets out of sync,  thinking,  “Grandpa,  you are going to have to fix the clock again because we messed it up.”  And,  before I know it,  it’s fixed!  A lot of people would say it must just reset,  but I know that just doesn’t happen with this type of clock.  I know that my grandpa is taking care of my clock for me.  Maybe it’s his way of letting me know that he is still around and checking in on me.  I kind of like knowing that he has been here,  and that I have someone watching over me.  I have always enjoyed my alone time,  but I also like knowing that I am never really alone.  So,  I am adding to this post,  the song that my grandfather liked,  and my grandmother used to sing,  back in the day.  Maybe I will play it,  and then wind my clock just enough to get it off kilter again,  and then wait for it to sync up!