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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40. Life Is Good

Life is good.  My life is pretty great,  except for that bothersome ALS  thing.  I have a wonderful husband,  who I’ve known for over half my life.  I have two great daughters,  and their boyfriends are awesome.  I have great families all in all, on all sides.  Not perfect,  but mostly great.

Life is good.  I always have enough money to do whatever I want (well, within reason).  And,  if I don’t have the money I need,  the Universe sends some my way in cash, or through some other means.  I mean, I doubt I could ever afford a mansion or a yacht or anything, but lucky for me, I don’t really want one.

Life is good.  I’ve inherited an appreciation for all things from Mother Nature.  Including everything with no more than four legs (eek!).  My grandfather was an excellent gardener,  and grew beautiful roses.   I would work in my yard/garden every day,  if I could.

Life is good.  Luckily I inherited an appreciation for the arts (both art and music),  and some artistic ability,  from both sides of my family.   I have a great-uncle who is a wonderful artist,  and who actually began a college of art.  He once owned one of the largest looms in existence,  and was going to give it to me,  but I had no room large enough for it!   I have famous musicians in my family.  They are awesome and I would say that at least one of them is maybe a little eccentric,  as most musicians are, which makes them even more cool.  I strive to be unique.  I hope one day someone,  somewhere will say, “Oh yea,  I remember her,  she’s sort of eccentric.”

Life is good.  My husband and I are at a point in our lives where we just do what we want.  We recently bought an RV,  and are going to start traveling anywhere and everywhere we can drive.  We started with a trip out West last year,  and we’re heading back there soon again this year.

That’s not to say that I don’t have bad days,  or that things don’t go wrong in my life.  If one thing,  like a furnace quits,  you can bet something else will quit too.  Recently,  our generator on the RV quit,  causing the cancellation of a month-long trip to Florida.  Soon after that our furnace quit,  and the transmission on the truck started giving out.  Everything all at once!  But,  I find something to be grateful for, and move on.  This time,  I was grateful that we were not in Florida when our furnace gave out in the middle of the winter.  It would’ve been disastrous to be gone,  probably returning to broken water pipes, and who knows what else.  We also happened to avoid some nasty tornadoes that hit the town in Georgia which we had planned to stay in on our way back from Florida.  Someone was looking out for us!  I think someone,  or a lot of someone’s,  know that I need all the help I can get,  and make sure I get it!

Life can be good,  no matter what is happening to you!  Nelson Mandela spent years in prison,  but managed to remain as content as he possibly could.  This poem by William Earnest Henley,  helped him face each new day with strength.

 Invictus

Out of the night that covers me, 
      Black as the pit from pole to pole, 
I thank whatever gods may be 
      For my unconquerable soul. 
In the fell clutch of circumstance 
      I have not winced nor cried aloud. 
Under the bludgeonings of chance 
      My head is bloody, but unbowed.  
Beyond this place of wrath and tears 
      Looms but the Horror of the shade, 
And yet the menace of the years 
      Finds and shall find me unafraid.
It matters not how strait the gate, 
      How charged with punishments the scroll, 
I am the master of my fate, 
      I am the captain of my soul. 

If you can forget about your problems for even a few seconds,  you will feel much better.  If you can forget for a few seconds,  you can change your outlook and your reaction.

“It’s not what happens to you, but how you react to it that matters.” – Epictetus

If you need a little push in the direction of happiness,  you can always listen to a great song.  You can’t help but smile and forget about your problems for at least a couple of minutes,  when The Muppets from Sesame Street and The Roots are singing a song!  Life is good!

 

39. Find Something To Believe In

Everyone needs something to believe in.  And, I don’t necessarily mean religion.  Oprah would say it’s the belief in something greater than yourself.  Many Native Americans would say it’s belief in The Great Spirit.   Stephen Hawking found his answers through science and in the cosmos.  People who find themselves living with any serious illness, often find the need to search for answers in how to get through it.  The answers may be different for everyone,  but faith in something bigger than yourself can help you find whatever those answers are for you.

I went to the Methodist church growing up.  It was a wonderful church,  but as I got older,  I wasn’t sure if it was quite the right fit for me.  Years later, my husband and daughters,  and I started attending our local Quaker church,  which felt like a better fit for me.  Then, one day my mother and I were in a book store, and I came across a little book called, Heal Thyself.   I read that book, and loved it.   I then found out that there were many more books by,  White Eagle Publishing    Searching bookstores and eBay, I read as many as I could find.   I discovered that this publishing company was a part of The Church of the White Eagle Lodge , which began in England.  And the rest, as they say, is history.   I had found the perfect fit for me.  I know,  the name sounds a bit, “woo-woo”,  but really it’s just a Spiritualist Church. 

Belief, be it in Christianity, Buddhism, the Wiccan faith,  or whatever fits for you, is a way to help make sense of whatever you are going through,  and the world in general.  Whereas in the past, people were limited to whatever belief was practiced in the town that they lived in, now we have the internet,  and access to beliefs all over the world.  You can go to  websites like Beliefnet,  where believe it or not, you can take a quiz which tells you which religion or belief system most closely matches up with what you believe in.  Don’t laugh!  I took the quiz, and their match ups were spot on.  It’s a great site to explore every belief out there.  When my girls were younger,  for years,  because of my illness, we didn’t make it to church as often as I would have liked.  Then there were many years when we didn’t go at all.   But I still wanted them to be aware of all the different beliefs there were, and wanted them to discover what would be a good match for them.  So,  I used to assign to them projects on some Sundays in loo of attending church.  They would have to pick a religion or belief and research it on the internet, using a few trusted sites,  like Beliefnet,  and write a few paragraphs on it (it seemed like a good idea at the time).  They usually spent less time on their project than they would’ve spent at church, just cutting and pasting instead of writing (they didn’t think it was as much fun as I thought it was… Shocking,  I know!), but I think maybe it helped us all learn a little something.  

Oprah did a seven part TV series on different theologies from all over the world,  simply called, Belief.   It is very interesting.   We may use different words to describe our faith,  but the meaning behind those words, often have a lot in common.  Beliefs can overlap and just because you may be a Christian,  doesn’t mean that you won’t also find yourself following the beliefs of the Buddhist faith,  for example.   Whatever you have found to believe in in your life,  it should bring you peace and joy.  Take some time to explore different faiths.  Even if you are perfectly happy with yours.  You might be surprised with what you learn, and find a new understanding of the people who you share this big blue marble with.

 

38. At Least You’re Not A Zombie (if you are, sorry about your luck)

One of my all time favorite shows,  Santa Clarita Diet,  just started its second season on Netflix.   Oh Sheila and Joel,  I empathize with you!  I still say (as I did in my first post about this show) that while our issues are very different, Sheila and I have a lot in common.   At the end of season one,  Sheila found out that there was a possible treatment to help stop her from getting any worse.  Not a cure though.  There are now two possible treatments out there for people living with ALS.  The oldest treatment adds maybe a couple of months to your lifespan.  The newest one,  maybe that or more,  for some people,  for others it may not work at all.  Neither of these treatments stop PALS (people with ALS) from getting any worse,  it just slows the progression,  maybe.   I declined the old option years ago.  The new one would not work for me because it contains Sulfa,  which I am allergic to.  Oh well.  Such is life.  Sheila and her family have to search for their own answers and treatments,  because there are no researchers out there working on a cure for Zombism.  Many of us with ALS look for our own answers and treatments because even though we have researchers out there trying to find a cure,  they haven’t found one yet.  They have had enough time already.  I’m not sure what year the official search began, but the disease was first described as being Amyotrophic Lateral Sclerosis way back in 1874.

It is close to the one year anniversary of the start of my blog.  My first blog post was about comparing Zombism and ALS,  and about Santa Clarita Diet.  A year later,  Sheila and I are still hanging in there.  Still searching for a cure.  Still adjusting as we need to, to the changes in our life, to keep on keeping on.  We are still laughing,  and crying, along with the craziness that is our lives and our new normal.   Sheila and Joel are still together, surviving as a couple through all the changes in their lives,  as are my husband and I.   I  am pretty sure the divorce rate is even higher for couples when one spouse is struggling with a serious illness or some type of major issue.  If you have a spouse who stays with you after you are diagnosed with ALS, Pica (Google it), Cancer, or some such dreaded disease (Zombism), they instantly become saints in the eyes of pretty much everyone you will encounter.  Especially people who you don’t really know very well.  When they find out you are still married,  you hear an audible gasp,  and maybe even a “wow”!  “That’s so great”,  they will say, “that he/she has stuck with you!”   My husband and I always find it funny that people think anyone deserves praise for not breaking the vows that they took before God,  and usually everyone they know, to stick with their spouse in sickness and health.   I guess it’s just that when you take those vows,  you and your spouse are generally very healthy,  and you are not thinking about what might happen in the future.  You certainly would never guess that one of you might end up with ALS or wake up one day a Zombie.  But, it happens.  If you don’t believe one of those is true,  just listen to episode 26 of my all time favorite podcast,  Lore.

I haven’t seen them all yet,  but so far in Santa Clarita Diet, every episode has a surprise ending.  Similar to ALS,  where every day has a surprise in store.  Not always the good kind,  but not always bad either.  Sometimes things just fall into place for Sheila,  and she finds a new fresh meal where she least expects it.  More often than not,  I receive a surprise at some point in my day.  The Universe/God is always looking out for Sheila and I!   Sheila’s husband sometimes complains that she gets too messy when she eats.  My husband sometimes complains that it takes me too long to chew up my food.  I say it takes the right amount of time for me to not choke and die…one problem Sheila doesn’t have.  You know,  since she’s already dead.   Well, technically undead.

Sheila and I both think that our husbands complain a lot (see episode 4), and they claim that they don’t.  Sheila says it’s okay,  even if Joel complains,  because he gives up so much for her.  Joel says,  it’s not about what you give up,  but about what you get.  I think he’s right.  It’s not about what life takes from you,  it’s about what you get out of your life that’s important.   One thing is certain, Sheila and I are made of tough stuff.  As are most people living with ALS and most Zombies (I assume).  Life throws it’s toughest challenges at us and we do our best to dodge some of them, and survive the ones that hit us.  And,  we try not to complain too much while doing it.

 

 

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!

36. When Your Inspiration Dies

What do you do when your inspiration dies?   Stephen Hawking died.  He was an inspiration to everyone living with ALS /MND.  Diagnosed in 1963, I believe he was known to have lived the longest with the disease.  When diagnosed,  he was given just three years to live.  He surpassed that,  and just kept going.  When you are given news that your life is about to end,  someone who defies the odds becomes your inspiration to keep going,  just like they did.  If he can survive,  then so can I,  I always thought.  And really,  I guess that hasn’t changed.  He did live with ALS for 55 years,  and I am only up to 20 years,  so far.

I suppose you just have to trust that the Universe /God has your back.  Just last night,  I remember waking up in the middle of the night,  having heard an odd noise.  I don’t remember exactly what it was,  but I remember thinking it almost sounded like a person saying something.  My husband was still asleep,  and no one else was there.  I definitely didn’t dream it, and it was loud enough to wake me up.  Then,  this morning after I had gotten up,  and was in the bathroom washing my face (well,  having my face washed),  I was thinking about what the noise could have been.  I wondered if somehow it was a noise from the face mask I wear for my bi-pap machine?  It has air constantly being pushed through it for me to breathe,  and can sometimes make noises when air breaks through the seal on the nasal mask.  But,  not sounds like a person making a noise.  Then,  I wondered if it was just someone watching out for me,  I don’t know,  God,  a Spirit guide,  guardian angel,  etc…  I wondered if I had quit breathing and someone thought they would wake me up so that I would take a breath.  That happens every night,  I mean,  me not breathing,  which is why I use the bi-pap machine.  It forces air into my lungs to keep me breathing while I am sleeping.  Since I was washing my face, I had my eyes closed as I thought about this,  and just as I had that thought about someone waking me up,  I heard a noise that sounded like something fell from the ceiling in the corner of my bathroom.  I looked and didn’t see anything.  Coincidence?  Or was someone saying,  yea, that’s what happened! 

Over the years,  people have commented and wondered why Stephen Hawking never used his status as a well-known scientist living with Motor Neuron Disease (ALS) to help raise awareness of the disease, and perhaps help to find a cure.  Call me crazy,  but I truly believe that at least part of the reason Stephen Hawking lived for so long, was because he chose not to focus on his MND.  He was in college and just beginning to make some wonderful discoveries about science and the way the world works,  when he was diagnosed.  He ignored his disease as much as possible, and went on to live his life to the fullest.   If he had focused all his attention on his disease,  he may not have had the focus necessary to make the scientific discoveries that he made.  I think a disease,  any disease,  can quite easily become the focus of your life,  and take over your life.   He certainly is proof that nothing,  not even ALS /MND can stop you from living a wonderful life.  Even from the great beyond, he will always remain an inspiration to many.

35. It’s A Wonderful Life

“It’s A Wonderful Life”  has always been one of my favorite movies.  I have no idea how many times I’ve seen it.  I watch it at least once a year.  I had the words printed into a decal and put on the wall above my fireplace, “It’s a Wonderful Life”   (click to see).  It’s just a little bit crooked.  The reason it is crooked, is because my daughter put it on the wall for me when she was only twelve years old.  The fact that it’s crooked reminds me that it’s a wonderful life,  not a perfect life.  Much like the chips in the dry wall around the door frames in my house.  Those chips and marks are from wheelchairs and patient lifts.  They are reminders of the bumps in life.  The stains on the now old carpeting are from pets we have loved,  and children growing up.  They all remind me that my house is not just a house,  but a home.  Every stain,  every mark,  has a story behind it.  I’m not opposed to getting some new carpeting one of these days,  but I don’t think I would want to live in a house where everything was perfect.  A friend of mine used to tell me every time she came over,  that my house had such a homey feel to it.  I took that as a compliment.

I remember that a friend of mine told me about a client of hers,  who took her on a tour of her big new fabulous house.  She had a big staircase put in,  with old-looking wooden stairs.  She kept apologizing and complaining when some of the steps creaked and made noise as they stepped on them.  They apparently were supposed to look old and used,  but not sound old and used.   I can’t imagine having that as a problem in my life.  I mean,  if you are worried about that,  your life is pretty good,  right?  Or,  maybe she just worried about everything, I don’t know.   I am thinking she might have more problems than squeaky stairs.

Life is all about learning.  If you led a perfect life,  I don’t think you would learn very much.  I think we learn more from the hardships in our lives.  But. I have realized that just because we have problems,  doesn’t mean we can’t enjoy our lives in the midst of those problems.  If you wait until your problems are solved to be happy,  you might as well give up now.  I don’t know of anyone with no problems.  I know of people who seem to have no problems,  but they are just trying to make their lives look better than they really are.  If something looks to good to be true,  it probably is too good to be true.  I generally don’t let things worry me too much,  or not for too long anyway.  If something breaks,  I  just get it fixed.   If I can’t get it fixed,  I buy a new one.   If that won’t work,  oh well,  I’ll figure it out eventually.  I’m not going to worry about it.   When something goes wrong,  or not the way you hoped it would,  just remember that you can’t know what you do want,  until you know what you don’t want.  So,  be grateful that you have been shown exactly what you don’t want,  so that you can now make the changes needed to move onto what you do want.

Try to focus on all the wonderfulness of your life.  Ignore the bad stuff and the problems as much as humanly (and safely) possible.  Search out the good in every situation.  And,  believe me,  there’s something good in everything.  If I can say that,  when I have been living with delightful ALS for 22 years,  then I think anyone can.

This may sound crazy,  but I have always loved to look at old tombstones,  and see what they have written on them.   I also love the design of the old ones,  there is so much detail to them.  Not like the new ones they have today which all seem to look-alike.  I think I found my love of tombstones through an art project in elementary school,  when we made a relief of the design and words off of tombstones (our school happened to be right by the cemetery).  Years later,  while visiting England with my mother,  we toured through some old churches and I saw the most beautiful headstones,  some with full stories describing the person’s life etched into the stones.

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I have often wondered what the perfect words would be to have etched on my stone.  How do you sum up a lifetime in just a few words?   I think I will simply say,  “It Was A Wonderful Life. “

 

 

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.

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.

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.