107. Little Miracles

 

We tend to forget that miracles happen.  It’s easy in our overly busy lives to forget that miracles happen, all the time.  They do.  The Universe is a magical place.   So magical that we have no idea how amazing it really is.  Magical things happen consistently.  We don’t even notice most of the time.  This blog post is about just one of those magic moments.

This blog post could have easily been titled something like, “A Day In The Life Of Someone With ALS “.  It was an ordinary day.  I was doing what I do almost every single day.  Basically, nothing.  I was sitting in my chaise with my cozy blankets and a heating pad on.  I was warm and as comfortable as I can ever get.  I had my computer in front of me, working away at checking email, typing a blog post, or researching something or another.  The same things I do every day.  I had my smoothie in front of me, with a straw strategically placed so I could get a drink hands-free because my arms quit working years ago.

My husband announced that he was heading to the woods to clear out an area and cut up dead trees.  I was busy on my computer, I could hear him outside start up one of his tractors.  It ran for a while.  I don’t know if he was having trouble with it, but he didn’t leave right away, which was a little odd, but I didn’t think much of it at the time.  I got a drink.  The smoothie was peach.  My mom had been making me one every day lately.  I had found a new supplement that people who have ALS are using, and some people are seeing improvement, so I thought I might as well try it!  Maybe the 998th treatment is the charm!  I’m only slightly exaggerating, I have only tried a few hundred different supplements!

The smoothie was so good.  It was dripping on me, so I moved my head closer, and that’s when something happened.  My neck muscles just gave out. I tried to pull my head up, but it wasn’t working.  I tried and tried, and it kept falling forward.  I had a neck pillow around the back and sides of my neck like you use in a car, or on a plane.  It usually is enough to give my neck just a bit of support and to rest my neck on it while I sit there.  Well, my chin slipped down in the open space in the pillow and was now resting on my chest.  My hair hit my straw in front of me, and smoothie started pouring out and down my hair, and onto my blanket.  It was a crocheted blanket, so it was also flowing through onto my clothes.  I had my head resting on my glass in front of me, causing it to tip over, ever so slightly.  If I let my head push too hard, I knew it would topple over and pour out all over my brand new laptop.  There was no way I could get my head up.  That wasn’t happening.  I use a Tobii eyegaze system on my computer to type and run the mouse.  My head was too far down for it to work since it has to be able to connect with my eyes to operate.  I could still hear the tractor running outside.  My husband hadn’t left yet.  He was too far away though, he can hardly hear me when we are in the same room, no way he would hear me when he was outside, even with the open windows.  I have an Echo beside me, Alexa was my only hope.  I started trying to wake Alexa.  But, with my chin resting on my chest, it was hard to talk loudly enough for the Echo/Alexa, to hear me.  Especially with the loud rumble of the tractor outside, and of course, I had to have a video playing on my computer! I really had it cranked up too, so I could hear over the noisy tractor.   It wasn’t working!  I was getting a bit frantic. My heart started racing.  I knew I could potentially be stuck there like that for literally hours!  This wasn’t the first time this exact same thing had happened.  ALS causes your muscles to randomly quit working before they totally give out and never work again.  I was once stuck for at least an hour, and that was bad enough, I couldn’t imagine hours upon hours.  But, once my husband left for the woods, he would be gone for hours.  My mom, or my sister-in-law, or mother-in-law are just phone call or FB message away, but with my head down, and no computer access, I couldn’t send a message. No one would know I needed help.  I tried to remain calm.  I remember the words, “No” and “Please”, coming out of my mouth.  It’s like I made no decision to say them, they just came out, over and over again.!  Especially, “please”!   I kept trying, “Alexa”!  “Alexa”!   She finally woke up.  I said, “drop-in on mom”!   Ugh!  I had forgotten that she was listed on the drop-in feature as, Sharon.  Well, I told myself, I got her to wake once, so I could do it again  My brain was reminding me that the more upset I got, the harder it was to talk.  Also, the longer I sat like that with my head slumped over the harder it was to talk.  Remember, the smoothie was still pouring out down my hair and onto my blanket and clothing.  I started to ask my grandmother for help in my mind!  She had passed away three years ago.  I always thought that if a person could pray to a saint, then why not a loved one??  Then, I added in, my husband’s grandmother!  Why not!?  Maybe she could get his attention, and make him come back inside.  He was still outside with the tractor running.  A minute or two later (I have no idea how long the whole ordeal was, maybe fifteen minutes total), the tractor shut off!  I don’t know why.  Then, I heard something.  My husband said something, I couldn’t tell what.  I said, “help”, in a now very, very quiet voice.  He said, Hang on, I’m coming!  I had a sense of instant relief!!  Remember, my husband, can’t hear me 99% of the time when he is sitting beside me!  So, how did he happen to turn off the tractor and somehow hear me with the computer running loudly, and my voice at a whisper?  Did his grandma, or mine get his attention?   I have no idea.  I’m guessing one of them definitely helped out.  It was a tiny thing, but to me, it was nothing short of a miracle!  A huge miracle!

I got my head up and situated, and we got my neck brace to give my neck a rest, and a little more support.  My husband went back outside and went back to the woods.  I went back to my computer, after saying a few silent, thank you’s, and went on with my day.  Miracles happen all the time.  You just have to believe.

93. There Is No Cure

May is ALS awareness month.  People need to understand how much ALS truly sucks.  Imagine never being able to purposely touch anything ever again.  Not your face, not your hair.  You can’t adjust your clothes, you can’t pet your dog, you can’t hold anyone’s hand.  You may find that you can’t talk, or if you can, not loud enough for anyone to hear you.  You can’t get up and go to the bathroom whenever you want to.  You have to wait until someone else has the time to help you.  You have to find someone who is physically strong enough to help you.  You have to find someone willing to help you.  People wonder why babies cry all the time. I say they cry because they get tired of waiting for someone to do absolutely everything for them!  Hahaha.  That is enough to make anyone cry!

While I am usually all for just ignoring ALS, as much as possible, I also understand the fact that we need awareness to get people interested in finding a traditional cure. To help,  you can donate to one of the few groups dedicated to finding a cure, ALS Therapy Development Institute.  PALS ( people with ALS) have several Facebook groups, and many of us post and interact through the website, patientslikeme.com  We become friends and close, almost like a family.  We all know each other, at least to some degree, and when one of our family members move on to the great beyond, it affects all of us.  We’ve lost several  PALS recently.  Full disclosure, it would be tough to think of a week that we didn’t lose anyone.  But, some are tougher losses.  Not because anyone is somehow more important, but some people are more active with blogs, and fundraising, and awareness activities.  So, they seem to make quite an impact on the rest of us, who are just too tired of it all or don’t have the resources to be able to do all of that.

There is no cure.   Four words that will change your life forever.  Or so it seemed,  when I heard them,  some twenty years ago.  But doctor and author,  Bernie Siegel,  has a different take on the meaning of a cure.

Healing is connected to living and loving. It’s the experience of wholeness, or holiness. It’s being as one with life and our Creator. Curing, on the other hand, refers to the physical body. Being cured means overcoming a disease and, for the time being, postponing death.  – Dr Bernie Siegel

So,  while there may be no cure,  that doesn’t mean you can’t heal.  I, for one, would much rather heal than be cured.  Although,  if I’m totally honest,  a cure then healing would be awesome!  But,  I have a feeling that most people who receive a cure for whatever ails them,  sort of forgets about healing whatever it is that brought that illness to them in the first place.  There are many people who believe that a physical illness is just a result of a mental issue.,  such as unforgiveness, anger, or some such problem.  So,  when you heal the body but do you don’t resolve what caused the disease,  you end up with another disease,  or reoccurrence of the same thing.   I’m not an expert on this, any more than living with and surviving a terminal illness makes you an expert.  But,  I do believe that’s how it usually works.  And, I am not getting into an argument about why then,  would young children get sick.  I don’t know.  I don’t have life figured out yet, but, I’m getting there!

The point is, just because there is no cure, or you are terminal, doesn’t mean you can’t get better.  Or maybe improve to some degree, or not get worse, at the very least, survive.   I really believe that doctors don’t know everything, even though some of them like to believe they do.  They can be wrong.  They just don’t have all the information.  They won’t take into consideration, for example, your faith.  Faith in something bigger than yourself can make a difference in how you handle any difficult situation in your life.  That is something that isn’t figured into survival rates for any serious illness.  Also, your mind is a huge factor.  Your mind can do amazing things.  I had a great grandmother who thought she was too old to do anything.  I was just a little kid when I was around her, so I don’t know all the details, but she really believed she was just too old to do much of anything, so she didn’t.  She did a lot of sitting.  She even had a lady living with her to help her with daily tasks like cooking and cleaning. From what I understand, there was nothing seriously wrong with her, she just thought she was old, so she started to act old.  Before long, she really couldn’t do anything, because she quit doing things for herself.  Her mind, and in turn her body, proved her right.  Whereas I made up my mind that I was going to make it past the predicted 2-5 years that the medical community so often hands out to new ALS patients when discussing survival.   I lived like I was going to keep on living, and my mind, and body proved me right.  Sure, I have lots of disabilities, but I am still here!

You might wonder what the video attachment has to do with this post.  Well, nothing, other than it is sung by The Cure, which is the subject of this posting, and the fact that music always makes everything better.  🙂

 

58. Live Satisfied

 

The reason you want every single thing that you want is because you think you will feel really good when you get there. But,  if you don’t feel really good on your way to there,  then you can’t get there.  You have to be satisfied with what is, while you’re reaching for more.     –  Abraham Hicks

Be satisfied with what you have,  and what you want will come to you much more easily.  Let the Universe do all the work.  You just decide what it is that you want,  and go about your business being happy and grateful for what you have, and the Universe will do the rest.  Sounds too easy,  doesn’t it?  Well,  it’s really not,  for some reason,  easy for us to do.  We worry about when what we want will come,  and why hasn’t it come yet.  What are we doing wrong?  What if it never happens?  We forget to be grateful for what we already have.  And on,  and on we go,  where it will stop,  nobody knows.  Then,  we don’t get what we want because of all the worrying and obstacles we’ve put in the way,  and we think to ourselves,  well,  I knew that would never happen!  And,  the Universe is probably thinking,  well I could’ve told you that a long time ago.  Well,  no,  probably not,  because the Universe / God/ Spirit / whatever name you prefer,  is rooting for us to succeed.

We get in our own way so much of the time.  We don’t even realize that we are doing it.  Our negative thoughts flow through our mind, and we often don’t even notice that they are there,  because we are so used to them being there.  Thoughts of things we don’t want in our lives show up in our minds constantly and that keeps them in our lives.  Thoughts become things,  but that is a whole other blog post!

Being satisfied with what you have is similar to saying be grateful for what you have.  You can want more, yet be satisfied with what you have right now.  Always looking forward to more,  and better things and better situations.  But,  satisfied with the things and situations you are experiencing now.

I am satisfied with my level of health right now (yes,  I really am).  I am grateful for the abilities I have and am working on being satisfied,  while looking forward to my health improving at some point.  But where I get hung up is in the constant thoughts of illness that flow through my mind.  There isn’t a day that goes by that I don’t think about my health,  and how I feel bad,  or focus on something I can’t do.  Just like a Facebook news feed,  thoughts scroll through our minds.  That’s fine,  if that newsfeed is filled with satisfaction, and things that you want in your life.  But,  if not,  then you are focusing on the wrong things.   You can’t focus on what you don’t want and get something else.  If you tune your radio station to 92.3 FM,  you aren’t going to hear what’s playing on 94.7 FM.  It just is impossible.  But for some reason, we don’t think that’s the case in life.  We want something and then think about the opposite of what we want,  all the while not being satisfied with what we have, and wonder why things aren’t going our way!

Practice paying attention to the news feed scrolling through your head.  Practice gratitude and satisfaction in your life. Talk about,  and think about the things you do want,  instead of the things you don’t want,  and see what a difference it makes in your life.

I decided to switch things up a bit,  and put the video at the end of this post.  Enjoy!

 

57. Ordinary Days, Extraordinary Memories

We must learn to recognize the ordinary parts of life as the extraordinary moments that they are.   You know,  the 3:00 a.m. feedings,  the never-ending laundry and dishes,  the nights of no sleep, and on and on it goes.  It is all so ordinary,  and yes, it is also extraordinary.  It only,  unfortunately,  becomes extraordinary when it is no longer there.  When there is no longer a baby to feed at 3:00 a.m., or you can no longer physically do those dishes and laundry,  or the person we did the dishes with is no longer there.  That is when we realize how extraordinary those ordinary times truly were.

Those of us who are living with a serious illness,  may have a much more limited amount of time to enjoy the moments of our lives.  So it is more important to make everyday  moments treasured memories.  When you find you have a limited amount of time to squeeze in the vacations,  and celebrations,  then you must make special memories out of the ordinary days events.  A simple dinner with all of your kids all home at the same time becomes a part of your treasury of memories.  A concert you went to with a friend,  the hummingbird that hovered five inches from your face just looking at you one day, your cat lying on your lap, that movie you went to with your kids,  all go into your treasury of extraordinary memories.  What you learn from appreciating the ordinary,  is that it doesn’t take a special event to be a special day.  It’s nice to have a special event to look forward to,  especially if you are enjoying poor health (can you enjoy poor health??… another blog post).   But,  the everyday can be just as special.

Some of my favorite memories are of time spent with my grandparents,  and even the details of their homes.  I can close my eyes and see every detail of their houses,  from the front door doorknob to the bedrooms,  and everything in between.  Certainly,  in the time it took to memorize those details,  I didn’t realize that one day they would seem so treasured,  but they certainly are.  I didn’t realize at the time that I would one day enjoy the memory of a simple picnic enjoyed outdoors with my grandparents and family.  The flies swarming around my mamaw’s  deliciously cooked  food,  and fresh garden tomatoes that she and my papaw grew in their yearly garden.  For often it’s the everyday memories that are the most treasured. when the loved ones attached to them are no longer there to make new memories.

So,  what the point of this post is,  is to not wait for a special occasion to take the photos,  or really enjoy your day.  Enjoy the everyday.  Enjoy something as ordinary as even doing your dishes,  or just reading a book,  etc… Because one day you may long for those ordinary parts of life. The memory of doing dishes with my grandmother,  was such a boring,  everyday thing,  but now I often remember doing the dishes with her.  She washed,  I dried.  She chatted away about everyday things that made up her week.  Me, tugging at her shirt,  which constantly crept up her back and settled into her pants waistband.  It was a daily ritual whenever I visited.  Lunch, and dinner, the same thing,  over and over.  Just another day, the ordinary, now an extraordinary memory.

 

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.