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.

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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.

11. It’s The End Of The World As We Know It, And I Feel Fine 

A popular (well, popular back in the day) song by R.E.M., it describes how I feel when I watch or read the news. If I don’t let all that bad news stress me out, that is. Watch any news program, and after five or ten minutes you will start to believe that the world has gone to hell in a hand basket! Apparently bad news is more interesting than good news,at least that’s what we have been conditioned to believe. With the news reporting much, much more bad news than good, is it any wonder people struggle with depression and live in fear of the world around them? The evening news reports on as many bad things as they can squeeze into their allotted amount of time, adds in a weather report, and sports , and throws in just one good story before the news ends. Which never really happens, does it? The news ending, I mean. I remember , back in the old days, if you wanted to catch up on the news you read the daily newspaper or watched the news at noon,5:00, or 11:00. Only.  Now, we have access to bad news 24 hours a day. And, thanks to technology and social media, we are bombarded with negative news.

I am convinced that there aren’t any more bad things happening in the world than there always have been. We just hear about them more than ever before. I also believe that the good things that happen far outweigh the bad. We just don’t hear about them nearly enough. Take a minute or two each day to look through Facebook or Instagram, or whatever site you like, and look at all the good things happening ( good things only) in the lives of your family and friends. Think about the good things in your life, and the good will begin to outweigh the bad.  Then, even when the news is filled with stories that are bleek and depressing, you will know that those are not the only stories to be told, and you’ feel fine.

10. Think Good Thoughts, Always 

It takes no more energy to think a good thought than it does to think a bad, or negative thought.  Yet, those negative thoughts seem to come so much more easily.  When someone cuts you off as you are driving down the road, doesn’t it instantly make you mad?  In a flash, your head fills with four letter words.  It is, however, entirely possible that the person who just cut you off was not just being an ass because they don’t care about anyone else.  Maybe they just found out that their mother was in a horrible accident, and they are rushing to the hospital.  You never know.  Why then, did they give you the finger as they cut you off?  Well, maybe they are an ass, whose mother was just in a horrible accident.  The point is, why not choose the better thought?  Not that their mother being in a wreck is good, but the fact that they maybe kind of had a reason for their actions.  I guarantee you will be happier and have a better day, if you choose to stay positive.  Shouldn’t that be a goal for us everyday, to have a good day?

Have you ever had a day when everything seems to go wrong? You have an appointment, or have to get to work, and maybe you over slept, and you couldn’t find your car keys and traffic was bad, so you were late to your appointment or to work. No matter what the scenario, instead of stressing out over everything that went wrong, try just ignoring it all and consider the idea that everything just went right. Maybe by being slowed down at every turn and causing you to be late, it also meant that you avoided hitting a deer that would have crossed your path if you had been on time. You never know.  So what if you are a few minutes late. I don’t think you would want to make it a habit, but, chill out (see blog post 7) and choose to think about your day in a more positive way.

I’m not always a glass half full kind of person.  Some days, all I have is a ring on the coffee table where my glass used to be.  I think that came from Roseanne Barr, years ago, and I think she was spot on.  But whenever you can, give yourself a break from the negative in your life and consciously choose good thoughts.

9. Living In Thanks 

I remember dinners at my grandmothers house usually began with a prayer of thanks. As a little kid, that was probably the only time I stopped to think about what I was grateful for, other than at church on Sunday’s and while I was opening up my gifts on birthdays and at Christmas. It has taken me years to get into the habit of not just giving thanks, but living in thanks. Living in thanks is easier said than done. When you are in a good mood it is easy to sit back and think of things you are grateful for. It gets harder when nothing seems to be going right. It is hard to feel grateful when your only source of entertainment and link to the world outside your house is the internet, and your internet is down. It might, however, cause you to be extra grateful when it’s actually working. It may even allow you the time you would have normally spent scrolling through your Facebook newsfeed to do something else, like write a blog post about how grateful you are.

Writing down three things you are grateful for every day is a good way to get started living in thanks.  If you can’t write them down, at least stop and think of three things. It can be anything at all. Something good that just happened, or maybe the sun is shining outside, or maybe your new puppy only had four accidents that day instead of the usual five. If you can keep a list or journal of what you are grateful for, when things aren’t going so well, you might feel better if you read through all the great things that have happened in the past. 

When something goes wrong, I am trying to get into the habit of stopping in that moment to be grateful.  One day, not so long ago,  as I stood up at the toilet after having left my sample (required for my refill of pain medication) in the container on the toilet, as that plastic container stuck to my leg and the contents spilled out onto the floor, I was instantly grateful that this happened in my bathroom and not the bathroom of the doctors office. I may have even been a little bit grateful that I wasn’t able to (didn’t have to) clean it up. There’s always something to be grateful for, no matter what the situation. We just have to get into the habit of tuning in on the good stuff.

My favorite author, Pam Grout, wrote a book called, Thank & Grow Rich: A 30-Day Experiment in Shameless Gratitude and Unabashed Joy. 

It’s one of my all time favorite books. Pam believes that when you live in gratitude, you are living in the frequency of miracles. I know that when I focus on the good things in life and expect more amazing things to show up, they do.  If you tune in to a radio station that plays all rap music, and you want to hear classic rock, what will you get?  Rap.  Sure, every once in a while a classic, like “Walk This Way” will play, but you will mostly just get more of what you are tuned into.  So, if you want to see more good things happen in your life, quit focusing on the not so good things, and tune in to all of the awesomeness already happening in your life and be ready for more.

8. Always Look On The Bright Side 

If you are living with a disease like ALS, MS, or any other illness which affects your muscles, you may, like me, at some point end up using a wheelchair. You also may not have use of your arms. Sure, it sucks, but why dwell on it? Look on the bright side of life (said in your best Monty Python British accent). 

If you are stuck in a wheelchair you can stroll through the mall shopping for hours without getting tired of walking. And, if your arms are weak, no more clapping required, no matter what event you are attending. Or maybe technically you could clap, but you are just too tired to make the effort. That’s okay, don’t do it. And, no more shaking hands with everyone. Think of all the germs you will avoid!  Don’t worry about explaining  why you aren’t shaking someone’s hand when they offer their hand to greet you,  just smile and let them figure out what to do! I know, it’s a bit rude, but if you are like me, and your  voice is weak, it’s really too hard to explain anyway.

Sometimes your predicament will allow for some really awesome treatment. Like your semi crappy concert tickets may be exchanged for some really awesome front row seats. And, meet and greet tickets may be thrown in for you to meet one of your favorite musicians. Or, upon seeing the disregard shown to you in a wheelchair at a concert, a security guard may make it his duty to keep you close to the stage, and other concert goers far from you and whoever you are with. A certain Mr. Rick Springfield may get up close to you, even standing on the arms of your wheelchair as he sings! But, I digress. 

The point is, remember to see the good and not just the bad in what you are going through. Always look on the bright side of life, and don’t forget the Monty Python British  accent.

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?

6. Out Of Sight, Out Of Mind

May is ALS awareness month. In honor of that, I thought I would share a story of what it’s like to live with ALS. True story.

Have you ever gone to a doctor’s appointment and been left waiting for what seemed like forever? Waiting so long that you began to wonder if they had forgotten about you? What am I asking? If you are reading this blog then chances are, you have or had a serious illness and, this has happened to you more than once in your many doctors appointments.  If you rely on others for your caregiving, then know that at some point, you probably will be forgotten. Not on purpose, but it just happens. I’m not saying this to worry you, but so you can plan ahead, and perhaps prevent it from happening to you.

I was in the bathroom late one evening. Yes, on the toilet. After what seemed like forever , in fact 10 whole minutes (I have a clock right in front of the toilet), I yelled for my caregiver. No reply. I waited a couple of minutes and yelled again. Still no reply. Ok, so after 20 minutes I really started to get upset. Normally they would check to see if I needed anything after just a few minutes. I cannot get up on my own, so I am stuck waiting. After 30 minutes, I start to worry. Did they fall asleep? Maybe they fell down and got hurt? The scenarios start playing through my mind. My foot falls asleep, my butt is going numb, and it’s only been 40 minutes! I try yelling again. Nothing. I keep yelling. I yell for the dog. Nothing. Really? Not even the dog remembers I am stuck in there? Note to self; get a better dog. Maybe a Saint Bernard rescue type dog. Now I really start freaking out after 50 minutes of sitting on the toilet. I start trying to figure out when someone will be over next. My daughter is due over in 10 hours. Could I really sit there for 10 hours? After 1 hour and 5 minutes, the yelling paid off. My carer had fallen asleep, and finally woke up! Relief!

When, and if, you are ever forgotten, try not to freak out like I did. Maybe you can plan ahead to prevent it from happening. Maybe a clock in the bathroom isn’t such a good thing. Maybe I can try to finish up in the bathroom before midnight, when my carer is likely to be tired. Maybe I could train my body to go with someone else in the room (yeah, that’s not gonna happen)? You know, out of sight, out of mind! Maybe I can get that rescue dog, or maybe a helper monkey? Maybe someone could just find a freaking cure for ALS!

5. Poor Poor Pitiful Me 

While at a restaurant , my daughter and I were at the exit waiting for my husband to pay our bill. A man and his family entered the restaurant and saw us standing there. He immediately had a look of pity in his eyes and came over to me with an, “Awww…you poor thing…”, saying how sorry he was that I was in a wheelchair. He then went back to his family and continued to talk about that poor lady in the wheelchair! My daughter and I looked at each other and as the lyrics to Linda Ronstadt’s song,  “Poor Poor Pitiful Me” (Poor Poor Pitiful Me ) floated through my head, we both burst out loud in laughter! And, while I am really sure he thought he was being nice, the fact remains that he literally described me as, “that poor lady”. Wheelchair or not, neither I nor my daughter think of me in that way, and it just struck us as absolutely hilarious! There was a time when maybe I would have tried to contain my laughter, worrying about hurting his feelings, but not anymore. Sorry, not sorry dude, you met the post ALS me!

4. Cake Or Death 

The comedian Eddie Izzard does a hilarious bit about The Church of England offering it’s parishioners a choice of either cake or death (https://www.youtube.com/watch?v=BNjcuZ-LiSY). Not such a tough choice, as it turns out. With ALS, you have a choice of either drunk or angry. Not much of a choice, as it turns out. And really not a choice at all, it’s more the luck of the draw as to which you end up with. Either you find your speech slurring when you try to talk, and you sound drunk all the time, or  you can’t take in enough air to get your words to come out without great effort, making you sound angry when you try to talk. Either way you end up really pissing people off. Even those closest to you who you think should understand your struggle. I’m not sure why they seem to forget that, just like every other muscle in your body, you may have little to no control over your voice. But, it happens. People will get frustrated and forget. Just like we PALS (person with ALS) sometimes forget that we aren’t the only ones who get frustrated when dealing with this disease day in and day out. I don’t know why we seem to forget that we don’t hold the copyright on frustration. But, it happens. Just remember when this happens, to give each other a break, and maybe share some cake.