63. Find Your Bliss

One thing a serious illness will do, is help you get your priorities straight.  The more serious the illness, the faster you figure out what you want to spend your time doing.  When I was diagnosed, I think it took me all of 10 minutes to decide I didn’t want to spend 40 hours a week working.  I turned in my two weeks notice almost immediately. That all changed though, after I had spent several weeks at home.  After working 40 hours a week, running errands, managing a household, taking care of two young children, etcetera, suddenly having an extra 47 ½ hours (work hours,  plus commute time) a week was a tough adjustment.  So, after realizing how much I enjoyed my work, when the opportunity to work 20 hours a week came along, I went back to my old job.  As my illness progressed, and things changed, so did my work schedule.  I was lucky enough to have a job where I could work part-time,  and fortunate to work for a company who eventually set me up to work from home.  That was back when working from home,  online,  was not such a common occurrence.  In the last few months of work, I worked as a consultant and just checked in weekly.  Finely leaving for the second time, five years later.

You will hopefully find yourself spending the minimal amount of time possible doing mundane everyday tasks. Maybe having a perfectly spotless house won’t seem so important anymore.  You might find yourself doing things you would probably never have done before.  You might just walk through the rain shower to get to your car at the back of the parking lot, instead of running through it.  You may discover that you enjoy the time to yourself as you mow the yard.  I found out that I really didn’t mind cleaning my house, but also didn’t want to spend all my time doing it.  Many people who are diagnosed with serious illness, especially one without an easy fix, start searching for alternative treatments,  which generally takes up a lot of time.

Find your bliss.  Do what makes you happy.  While we all have to the mundane everyday chores, don’t spend all your time on those tasks.  If you dread Monday’s because you don’t want to go to work, maybe you need a different job.  What’s that saying, “If you love what you do, you’ll never work a day in your life”?  It’s true.  Dragging yourself to a job you hate day after day can literally drag you down. That means more sick days, and the chance for serious illnesses to creep into your life.  I think that’s why it’s possible for the barista at your local coffeehouse to live such a happy and healthy life, while the president of the local bank is dragging themselves out of bed and into that coffeehouse for a jolt of caffeine just to make it into their job at the bank around the corner.  They may be making more money, but the high stress job is making them unhappy.

The moral of this story, is that you don’t have to wait for an illness to strike before you take stock of your life and how much you are enjoying yourself.  Don’t wait.  Do it now.  Make changes if you need to, before you have to.    Follow your bliss.  The rest will take care of itself.  Just be happy, that’s really the most important thing there is in life.

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56. Surviving

You know you are a survivor when it is the anniversary month of your diagnosis,  and you suddenly realize that you had forgotten all about it!  Happy Anniversary to me!  I was diagnosed with ALS 20 years ago this month.  I was supposed to have kicked the bucket, so to speak,  somewhere between twelve and fifteen years ago.  Needless to say,  doctors are not always right.  Don’t get me wrong,  I love my doctors (and I have several),  but they don’t know everything.  Just because you’re terminal doesn’t mean you can’t live a happy,  longer than expected life.

“At first I was afraid, I was petrified…”.  This snippet of the popular song by Gloria Gaynor must be read as if she was singing it to get the full effect.  A few days have made me think of this song,  the day I was diagnosed with ALS,  and the last inauguration day are two that come to mind.  That is one good thing about living with a serious illness, things that may have once seemed horrible or insurmountable, are no longer that big of a deal. Because, if you can live with/survive a serious illness, then you can easily live with/survive anything!  Not only will you survive, but you can be happy as well,  because being happy is a choice and has very little to do with what is going on around you.  You can’t know what you want,  until you know for sure what you don’t want.  Sure, you can think you don’t want to be ill,  but believe me,  once you are,  you really, really realize what you don’t and do want!  Not only in terms of what good health means,  but what is important in your life.  What you want to do for work.  Who you want to spend your time with,  etc… 

This blog post may be unusually short,  because this time I am keeping it short and sweet.  You can survive, whatever life throws at you,  and you can be happy doing it!  I am proof.  You’re welcome.

 

52. It’s All About The Journey

Life is all about the journey.  Every time.  In every situation.  Whatever you are doing, the path to get there is always more important than the getting there.  What happens on your way is always more fun than the destination.  Or,  at least it should be.

I love,  love, love Christmas!  It is by far my favorite holiday.  I start the gift buying, usually in the summer.  Just one gift here and there,  whenever I run across something someone would really like.  I start decorating early.  Soon after Halloween,  I get out a few Christmas decorations.  I totally skip Thanksgiving.  I mean,  we celebrate Thanksgiving,  but aside from a family dinner and putting up a fall wreath,  I move right onto Christmas.  I really enjoy anything and everything about Christmas.  The music,  the decorations,  shopping for gifts, baking special Christmas cookies,  etc..  I used to love going to church on Christmas Eve (it’s hard for me to go out in winter now), because I loved the Christmas hymns.  I mean, I loved the whole evening, getting to see friends,  and hearing the message of Christmas,  but I especially loved the music.  However, when it’s the middle of December, the closer Christmas actually gets,  the more I want to slow it down,  because I know it will all be over in one short day.   It’s the journey that I enjoy so much,  not Christmas Day.

When you watch a movie or a television program,  it’s the figuring out of the who-dun-it that you enjoy,  not the actual answer to the mystery.   When you go on vacation,  you should enjoy the entire trip,  not just the beach,  or the museum,  or the restaurant,  or the tour you took,  but the entire trip.

So,  if you’re not enjoying yourself yet,  you should probably start really soon.  You can’t wait until you retire to start enjoying life,  or wait until you get the job you want,  or the house you want.  If you are sick, you shouldn’t even wait until you are feeling better to enjoy your life.  Start right now.   Slow down, and notice life.  Pay attention.  It’s easy to get so caught up in the busyness that is your life that you forget to have any fun.   I must admit that I used to be like that.  Married, with two young children and working forty hours a week at a job with a round trip commute of 90 minutes every day,  I was always on the go, and never slowed down enough to even think about what I was doing,  let alone enjoy myself.  Well,  I’m sure that’s not totally true.  But, looking back, life was a bit of a labyrinth that I seemed to go through without a lot of thought or reflection.  Until ALS entered into my life, and brought it to a screeching halt.  At least at first.  A serious illness has a way of bringing life to a stopping point,  whether you are ready for it or not.  It somehow makes you stop and pay attention to everything a little,  or a lot,  more.  Actually any sort of tragedy,  not just an illness, has a way of making you stop whatever you are doing and pay attention to life.

So,  try not to wait for a tragedy or illness,  stop and pay attention to life before something forces you to.  When I was a kid,  I lived in a haunted house.  That’s not that big of a deal,  it just meant that my great-grandfather who used to live there,  still either lived there,  or visited often.  But,  what that led to was a lot of talk amongst my parents about things like,  did you see that light just go off when we drove into the driveway?  And,  conversations about odd things that happened.  I didn’t really understand any of it,  but I came up with my own theory that if I believed in ghosts,  one would not find the need to prove their existence by showing up in my room late one night.  So,  if I didn’t want to see a ghost,  all I had to do was believe in them.  I didn’t realize at the time,  that the older gentleman who I saw standing at the end of my bed all the time,  checking in on me,  could have been called a ghost,  but that’s another story.

Maybe a similar approach to health and avoiding tragedy would work.  Don’t wait for bad health or tragedy to strike,  don’t wait to be forced to slow down and take a break.  Enjoy today.  Stop and smell those roses!  Really, just enjoy the journey!  That is what it’s ALL about.  If you aren’t having a good time in your life,  you are doing it wrong.  No worries though!  Just change it up!  Change whatever you need to,  to enjoy yourself.  Start anytime.  If you make a change and that doesn’t work out for you,  try,  try again.

Slip slidin’ away,  slip slidin’ away

You know the nearer your destination 

The more you’re slip slidin’ away 

These lyrics from a song by Paul Simon remind me to enjoy the journey of life.  It’s easy to get caught up in your destination,  whatever that may be, health, or the perfect job,  or a certain amount of money,  whatever your goal.  It’s easy to let your quest take over.  Before you know it, it has become all about the destination and you have forgotten about the journey.  Life is all about the journey.  We have to remember that.  Don’t wait to live your life after you accomplish the goal.  Don’t wait to be happy after you get better.  Don’t let life slide away from you, enjoy every slippery minute!  

21. Unfollow, Unfriend

 

Twitter, Instagram, Facebook, Snapchat, etc.   The list goes on and on.  They can be oh so helpful, and a  real lifeline to someone with any serious illness, but they can just as easily drag you down. Especially in an election year. Your Facebook newsfeed can be worse than  any political debate or news program. Not just opinion, but down right mud slinging. 

Or,  like recently, when a tragedy occurs,  the news is everywhere you turn.  Speculation about the killer and his / her motivation to commit such a crime.  Arguments about why the person committing the crime was not stopped sooner.  Arguments and division over whatever laws were broken and how they should be changed or not changed.  And on,  and on until that’s all you hear and think about.  Empathy aside,  all that negativity isn’t good for anyone, let alone for someone who needs to focus on healing.  What you read and think about can have a huge impact on you physically.  Take a break from the news, at least the daily negative reports , and I promise the world will keep right on spinning without you there to hear about it.   However, you will feel much better not worrying about the latest political battle, or what country is bombing their neighbor.  I’m not suggesting you permanently stay oblivious, but just take a break.  Give it a try, take a few hours off,  or maybe even a day off from the news and social media.  Unfollow or maybe even unfriend those people or news outlets who constantly post negative information and see if it makes a difference for you. 

19. Life’s Been Good To Me So Far

 

Joe Walsh was spot on with his song, “Life’s Been Good  “.  I would say, for sure, life’s been good!  Except, I guess, for the whole ALS thing, and the golf ball sized kidney stone, that wasn’t much fun.  But we are focusing on the good stuff in this blog post.  If you listen to the lyrics, they say,

I can’t complain, but sometimes I still do.  Life’s been good to me so far.

I think it’s okay to do a little complaining.  My blog posts may not show it, but I probably meet my quota on complaints most days.  Just ask my kids, I’m sure they would say that I am a complainer.  The trick is, to know when to stop your complaining and thank your lucky stars.

I think Lou Gerhig got it right too, when he uttered  those now infamous words,

 “Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.”  

Lou Gehrig realized how many good things he had going in his life.  It’s all about being grateful for what you have. No matter how little you might think you have going for you, start listing it all and it will add up faster than you might think.  Oprah suggests you keep a gratitude journal. Write down something , or a few things, every evening that you were grateful for that day. Gratitude for what you have can change your life. Not just your outlook on life, but your entire life. A Course In Miracles says, a miracle is when a shift in your outlook occurs.  That’s how a person, who is supposed to be dying of cancer, can be truly happier than their neighbor who has their health and enough money to last a long lifetime.  My outlook has definitely shifted in the last several years.  I went from, “Oh no, I have ALS” to, “Yes, I have ALS”, to, “Oh yea, I have ALS”.  I consider every single day I am still here a miracle, and try to focus on life and not ALS.
Gratitude is one of the best gifts you can give yourself.  What are you grateful for today?

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.  

13. Forget About It

Forget about it! Said in your best mobster (think Tony Soprano or Mickey Blue Eyes ) voice.  We live in a world where the things you focus on are the things that manifest in your life. Did you ever notice when you try and try to save up money for something you really want, how hard it can be? Your thoughts migrate towards your lack of money. Your focus on your lack of money continues to bring about a shortage of funds.

Have you heard the saying, “The rich get richer and the poor get poorer”. While it’s just a saying, there may be some truth to it. It is, after all, very difficult to think about anything other than your absence of money, when money is what you really need. It is much easier to envision always having enough money when you already possess money. Likewise with your health, and everything else in your life. The more you concentrate on something, the more you receive exactly
what you are concentrating on. So, if you are sick, the more you talk and think about your illness, the more it clings to you. If you no longer want to be struggling with something, forget about what you don’t have, and focus on how great you will feel when you have what you want. I know, that’s easier said than done, especially with health issues. You still have to deal with doctors, tests, treatments and medications probably on a daily basis. so your illness is on your mind often.

My favorite author, Pam Grout, offers a series of simple experiments to help us understand just how the universe works, in her book, E-Squared: Nine Do-It-Yourself Energy Experiments That Prove Your Thoughts Create Your Reality https://www.amazon.com/dp/1401938906/ref=cm_sw_r_cp_api_EHtwzbKFXBYSC

 She does a much better job of explaining things than I could, so I suggest you read her book.  But, the gist of it is that God (or whatever you prefer …Mother Earth, the Great Spirit, etc) is always listening and gives you what you are focused on in life.  So, we need to focus on what we want and forget about what we don’t want, i.e. probably your current situation.  Like I said, she does a much better job of explaining it. But I think she is spot on!  I have done most of her experiments, and have received everything from a bright blue butterfly to a seahorse, to a surprise credit of $24.85, to a write off of a student loan (a total surprise)!  

I don’t have this all figured out, I do, after all, still have ALS.  But, I try not to focus on that, and instead, focus on all the awesomeness in life and expect more amazing things to come my way.

12. Just Do It 

Sometimes, the longer you stay in your house because you don’t feel well, the easier it becomes to never go out.  I don’t think you can really understand that unless you’ve lived with a long term illness.  I remember a life, long ago, when I was always on the go.  Both before and after their were kids to take up my time, I was always busy, probably too busy.  I can remember a time when I owned a computer, but rarely had the time to use it.  My computer and IPhone are now what link me to the world outside my house. 

When you have a serious illness, you may find yourself leaving your house less and less, the longer you are sick.  I was just too tired to go out much at first.  Then everything became so hard, and took so much longer than it used to, it hardly seemed worth the effort required to go anywhere.  Add to that, pain, if it’s below 50 degrees.  Having a comfortable chair at home with warm blankets in the winter, a nice breeze (or air conditioning) in the summertime, all add up to staying home.  A lot.  In the winter, I don’t go anywhere for weeks, sometimes (depending on the weather) months at a time.  When warmer weather arrives, I get out more often.  Sometimes you have to force yourself to go out into the world.  Just do it.  No matter how uncomfortable you may be, physically and mentally, don’t let yourself go all Grey Gardens.  Just do it.  I always feel better after getting out of the house for a bit, even if I don’t really go anywhere, or if my outing doesn’t go smoothly.  I went out one day earlier this year, and practically knocked myself out (I had a little accidental help) hitting my head as I got into the car.  That being said, even with the slight concussion (I’m guessing), I was glad I went out for a few hours.

I remember being out one day, many years ago.  We had eaten dinner at Applebee’s, and were leaving our table, when a man sitting at a nearby table looked at us and said, “Good for you , going out! It might be hard, but you keep going out!”  I have no idea who he was, or why he said that, but he was right.  No matter how hard it is, you have to get out and get a little vitamin D.  Even if you don’t go any further than out the front door.  Just do it.  I guarantee (mostly) you’ll be glad you did.

7. Chill 

One warm day, my daughters took me to Applebee’s for lunch.  We got there early, around 11:30.  When the waitress came to take our drink order, I ordered one of the mixed drinks (with alcohol) off of their little drinks and desserts menu.  The waitress looked at her watch and made some comment about me starting the drinks early and something about it not even being noon yet.  Maybe I should have told her that I don’t often leave my house and go out to lunch, so when I do, I try to enjoy myself and that I enjoy having a drink that I wouldn’t normally have at home.  Maybe I should have made a comment about the time when she brought our drinks, because it was way past noon before that happened.  Not only was I not driving , but I was not even walking!  I later made a comment with my tip.  Why does she think it’s wrong to drink before noon?  Why can’t I wear white after Labor Day?  Why don’t people eat seafood at breakfast time or have pancakes for dinner?  Why is it weird to like dandelions in your yard?  Who made up all these rules and standards of behavior?  No wonder little kids are so happy, they don’t know all the rules yet.  The older we get, the less happy we seem to be.  Maybe it’s the whole terminal illness thing.  You know that, “I don’t know how long I will be here so I should make the most of every day ” thing, but it just seems to me that there are too many silly guidelines someone, somewhere decided we should follow.  I seem to care less and less about such things as time goes on.  I care less about so many things, including those things that often pop up in the gossip category.  So what if the neighbors granddaughter is unexpectedly expecting?  She will figure things out.  No, I can’t believe how many people go to the store dressed in whatever they’ve slept in, but that’s their choice.  If they want to look ridiculous, that makes my shopping trip that much more entertaining.  So what if your kid sucks at Algebra!  If they aren’t good at math, help them find what they are good at.  I find myself stressing less and less, and rarely worrying about anything.  I must say, life is much more enjoyable this way.   ALS is kind of like a gigantic hard to swallow, chill pill.  It is hard to swallow/accept, but once you do, you (or at least I) chill out and quit worrying about all those things that once seemed so important.   Even those problems or situations which seemed overwhelming suddenly aren’t so impossible.  If at all possible, I recommend that you try to chill out a bit even if you aren’t dealing with a serious illness.  Who knows, that might be just what you need to prevent an illness from arising.  If you find that you need a little help getting your “chill” on, check out this video of Willie Nelson.  Because, is there anyone on Earth who is more chill than Willie?

3. You Oughta Know 

This blog post seemed like a good one for all of the moms out there.  Happy Mothers Day!

When you are not able to easily make note of appointments, shopping lists, your kids busy schedules, etc., you rely on your memory. I am talking about when you physically can’t write anything down without the help of a switch or a computer eye gaze system, and not just because you can’t find a pen, or your phone. This is true for anyone who has trouble using their hands for whatever reason, but it’s  especially true if you are a mom. You should not only sharpen up your memory, but you will find that life is easier if you can practice your psychic skills as well. Because, believe me, it won’t matter if you are feeling so bad that you have been in bed for weeks, or if you haven’t physically been able to move your arms or legs in years… when your kid can’t find their left tennis shoe, or backpack, or whatever it may be, you will be the one they yell for. You are the one they will expect to help find it. So, if you can’t get up and go find it yourself,  you had better hope your psychic abilities kick in so that you can magically tell them where said item is located. Besides knowing where all personal belongings are located at all times, you will also be expected to know things like, are you out of Oreo’s? Do you have any orange juice in the fridge? It doesn’t matter if your wheelchair won’t fit in your pantry, or if you can’t physically open the door to your refrigerator. You are the mom and that means you ought to know.

This “you oughta know ” theory comes into play with husbands too. You may not be able to write a check, but you should somehow know where your husband put the checkbook. Also, are there any stamps left, and where are they? The list literally never ends.

What does any of this have to do with the Billy Joel video, you ask? Well, nothing, except that the lyrics, “you oughta know by now “, are in the chorus and kept running through my head as I wrote this.  Also, music makes everything more enjoyable!

So,  if you are dealing with a serious illness, you might want to start taking some Ginkgo Biloba. I  think that’s the herb that helps improve your memory. I probably oughta know that too.