15. Music, Music, Music 

Crank it up! Music has the ability to lift your mood like nothing else, except maybe those cute kitten Youtube videos. It can transport you into the past, to a time when you felt happiness, love, friendship, sadness (just skip those songs), etcetera. Play some old tunes from your high school years, and I guarantee you’ll instantly tap your foot and sing along! Once I learn the lyrics to a song, they seem to be permanently etched into my brain, unlike all those facts I spent so many hours trying to memorize in school.

I think I got my love of music from my grandmother because she loved to listen to everything under the sun, and I do too. I don’t fit into the target audience for Katy Perry or Awolnation, but I love their music. My kids are probably just happy I couldn’t drive them anywhere and embarrass them with my music selections.  Although, I don’t always enjoy the music they choose either.  I remember one day sitting on the porch  supervising my daughter doing yard work and I wondered how many people drove by and didn’t see her crouched down beside the car pulling weeds, and just saw me, heard her music, and thought I was the one jammin’ out to ,”You’re A Douche Bag”.

Live music is the best.  There really is nothing like a concert to make you forget about everything except the music you are listening to.  Singer/songwriter Michael Franti and his wife, Sara, know how much music can affect people in a positive way, and they created a foundation called, http://www.doitforthelove.org which gives concert tickets to anyone who is living with a serious illness.  Depending on the musician and their schedule, sometimes they can arrange for a “meet and greet” with the musician, as well as free concert tickets.  If you are able to donate to their foundation, do it!  I went to an awesome concert to see John Mellencamp last year, thanks to “Do It For The Love ” foundation.  I try catch a concert or two every summer.  This summer, I’ll see Alice Cooper, ZZ Top, and Arlo Guthrie. 

Whenever you are feeling down, give it a try. Listening to your favorite songs or finding new music is so easy now, no CD (or album or 8 track or cassette tape, depending on your age) purchase required,  Thanks to internet sites like Amazon Music, or Spotify (or many others), Just type in the name of your favorite artist or song,
and let the musical healing begin!

15. Moves Like Jagger

I got to see my rockstar urologist, Dr James Lingamen, this week.  In the world of urology, he is Mick Jagger.  For approximately the price of a concert ticket, I get a private meet and greet with him every year, also known as my yearly check up.  I didn’t know anything about him  three years ago when I picked his name out of a long list of urologists approved by my insurance company.  I didn’t know that people travel from all over the country, and even from other countries to be treated by him.  He was not my first choice by the way, but the Universe/God made sure I ended up with the best urology surgeon in the U.S., or so I was told by every person who saw his name on my hospital paperwork.  He  informed me that my golf ball sized kidney stone, and smaller stones would have to be removed surgically because they were causing infection throughout my body., and that you actually could die from a kidney stone (or rather, the infection it causes).  Even though I couldn’t move an inch on my own, and had an FVC so low that I could not be put under using anesthesia, and could not lie down flat (for a surgery usually performed with the patient lying on their stomach), Dr. Lingamen said he had performed this surgery on difficult cases before with patients using a local (patient awake).  He seemed to think it would be no problem whatsoever.  What he was actually thinking, I don’t know, but he made me feel like it was no big deal.  I got the feeling, later on after hearing comments made by others involved with the surgery, that it was indeed, quite a big deal.  I went in for surgery and found out it would have to be delayed a month due to the amount of infection throughout my system.  A stint was put in (a dreadfully unpleasant procedure) and I was given a month of strong antibiotics.  Fast forward to around a month or so later, and after two days and two surgeries, all my stones on the right side were gone.  I don’t recommend having surgery under a local and wide awake, but if that’s your only option, it’s doable.  Luckily, during my surgeries there was so much going on all at once and so many people talking, that it was hard to concentrate on any one thing, and the hours flew by.  I could definitely tell that the people in the room were used to the person on the operating table being asleep, it seemed like my feet and legs were constantly being bumped into, as if I were just a piece of furniture.  But the most important people, my surgeon and anesthesiologist, were very aware that I was awake.  They even cranked up the heat for me in the very cold operating room.  I was placed in the pulmonary wing for recovery, due to ALS related breathing issues.  Except for a couple of bad eggs, I had the most awesome nurses who worked so hard and were such a huge help.  My bed was amazingly comfortable.  I wish I had the same self adjusting mattress at home.  I ended up with a small private room, which meant quiet and I could set the heat on whatever I wanted.  My favorite nurse even brought in a roll away cot so my husband could stay with me the entire time, which he did by the way, for four days with very little break.

  After four days, I went home.  I really wouldn’t want to do it all again, but I did it! And now I have a great story I can tell, although I rarely bring it up in conversation.  Usually it’s my husband who recounts the story of my courageous surgery.  This week, before I talked to my doctor, I met with a Fellow working with him.  As we talked about my surgery, he said he wished he could take me around to talk with some of the whining patients who need simpler procedures but complain about how hard it will be for them and how long it will take.  I think my lack of complaining about it all and what some people would view as brave or courageous simply comes from having no other choice.  When you know you only have one option, the choice is easy to make.  As with ALS, when the doctor says you have no options, you have no choice but to just keep going the best you can, for as long as you can. You may not feel particularly strong, but that’s how you end up being viewed by others.  When something minor happens, I think we all complain a little too much sometimes.  But when it comes to the big stuff, most of us are stronger than we feel, and braver than we think.

14. Thank God For Shonda Rhimes  

Find something to look forward to, a reason to get out of bed in the morning.  It can be literally anything.  It can be easier to keep yourself going through the hard days if you have something to look forward to, something you want to do or see.  Something you don’t want to miss out on. 

For me, the biggest thing has been my kids. When a doctor told me I had only a few years left to be with my family, I said, no (in my mind).  I didn’t want to miss out on seeing my kids grow up.  I just kept planning and looking forward to our lives like usual, only more so.

But it’s not just the big things that keep you going, it’s the little things too.  Like planning on taking a vacation.  Or maybe something as small as a new coffee frappuccino coming out at Starbucks next month.  Something to actively plan for and look forward to.  

My daughter got me to read one of the Harry Potter books, and that instantly gave me another thing to look forward to.  I couldn’t wait to read the next book in the series, and the next, and the next, until I had read them all.  And then there were the films based on the books to see and to look forward to.  My ALS just had to slow down because I wasn’t going anywhere until I had seen all of the Harry Potter movies!  I saw them all.  That’s when the Powers That Be/God, lead me to Shonda Rhimes.  Also known as the creator of some of the best shows on TV, and you guessed it, another reason for me to hang in there for one more season of, “How To Get Away With Murder “, “Scandal “, and “Grey’s Anatomy”.  I’m not gonna miss out on what happens with Merideth Grey because of ALS!  Ok, I am not saying that all you have to do to keep going when dealing with a serious illness is to find something to look forward to …but, focusing on something besides your illness is a huge piece in the puzzle.  I am looking forward to seeing  Alice Cooper in concert this summer, I don’t want to miss that.  And on and on it goes.  I am just going to keep on keeping on, and finding new things, both big and small, to look forward to for as long as I possibly can.  

13. Forget About It

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

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

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

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

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

12. Just Do It 

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

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

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

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!