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.

 

 

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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. “