22. Tune ‘Em Out


You know who I’m talking about. The people who  ask you if you’re getting better, when you have a chronic condition that you are just living with, but until a cure is discovered, you aren’t about to recover from.  But you realize trying to explain this is both pointless,  and a waste of your precious time. So you simply say yes, tune them out, and move on.

Or, the health care worker who asks your caregiver all their questions,  even though you  are sitting right there,  and can understand and respond on your own.  

 Those people who park in the handicapped parking spaces and then literally run into the store. I actually had little cards printed up that say, “Stupidity is not a handicap. Please park elsewhere.”  My husband places one under the windshield wiper of any vehicle we see parked in an accessible space without a handicapped tag or license plate.

The person who talks to everyone, then yells their questions or comments to you, because sitting in a wheelchair simply must somehow mean you are suddenly hard of hearing.

 The healthcare provider (usually durable medical equipment… wheelchair,  lift,  etc…)  who can’t understand why you need more than a few minutes notice that someone is going to show up at your house to make an adjustment or a delivery.  Those people who don’t bother to let you know when they are running behind schedule,  or aren’t going to make it at all,  because why would they need to let you know if they can’t make it for a scheduled home appointment? Aren’t you home all the time anyway?

The person who’s neighbors, cousins, sister in laws, hairdressers, nephew took such and such supplement, and was suddenly cured of (fill in condition here). You should try it, I bet it would cure you too! Funny how the doctors never hear about these simple miracle cures.

The person who comes to visit you, a person with a serious illness,  and spends most of their time talking about their aches and pains,  about how bad they feel.  Or they have been sick,  so they thought they would come visit you and share their germs with you!  

 Or, the people who squeeze in and jump ahead of you in your wheelchair in a busy store. Then say nothing, or look back at you and say, “Oh, sorry! “, as if they didn’t realize you were there. Or, the lady who looked at me riding in a wheelchair in a very packed store and said, “Now you’ve got the right idea!” Yes,  I am SO glad I can’t walk through a busy store!  Idiot (I think to myself doing my best Debra Barone impression). 

 Believe it or not, I once had a minister tell me, “You know, you don’t have to die from ALS. You can die from something else! “ Yea,  Rah!! Like dying  from being hit by a bus would be better?  I’m not so sure.  These people are clueless. Some days it seems like most people are so wrapped up in themselves, or their task at hand that they don’t notice or care what anyone else is  going through. When I come across these people, I try to remember what I read in a book written by Christopher Reeves. He said, what a person is going through in their life is relative. Meaning a bout with the flu, or a divorce for one person may affect them as dramatically as a terminal illness does to someone else. It’s all relative.

You’ve got enough going on without wasting even a minute trying to figure these people out. So, just smile at them, nod your head, and tune ‘em out!


21. Unfollow, Unfriend


Twitter, Instagram, Facebook, Snapchat, etc.   The list goes on and on.  They can be oh so helpful, and a  real lifeline to someone with any serious illness, but they can just as easily drag you down. Especially in an election year. Your Facebook newsfeed can be worse than  any political debate or news program. Not just opinion, but down right mud slinging. 

Or,  like recently, when a tragedy occurs,  the news is everywhere you turn.  Speculation about the killer and his / her motivation to commit such a crime.  Arguments about why the person committing the crime was not stopped sooner.  Arguments and division over whatever laws were broken and how they should be changed or not changed.  And on,  and on until that’s all you hear and think about.  Empathy aside,  all that negativity isn’t good for anyone, let alone for someone who needs to focus on healing.  What you read and think about can have a huge impact on you physically.  Take a break from the news, at least the daily negative reports , and I promise the world will keep right on spinning without you there to hear about it.   However, you will feel much better not worrying about the latest political battle, or what country is bombing their neighbor.  I’m not suggesting you permanently stay oblivious, but just take a break.  Give it a try, take a few hours off,  or maybe even a day off from the news and social media.  Unfollow or maybe even unfriend those people or news outlets who constantly post negative information and see if it makes a difference for you. 

20. It Might Be A Tumor

There’s a scene in the movie Kindergarten Cop, where Arnold Schwartzenegger complains about a headache, and one of the kids says it might be a brain tumor.   Arnold says, “It’s not a tumor!”  Whatever your problem, at least it’s not a tumor.  And if it is, so what?  Someone, no, a lot of someones out there in the world have something worse.  I say, be thankful for what good health you do have, no matter how much or little that is.  I thought ALS was bad, until I met people living with ALS whose spouses left them after they were diagnosed.  And left them with children to raise.  Or worse, took their children from them.  Or how about my friend Libby, who was lucky enough to get ALS and also start losing her vision.  Or, my friend Lisa, who was diagnosed with lung cancer right after she quit smoking. It spread into her brain, and she died a year or so later.   I thank my lucky stars that I’ve had to deal with ALS for so long.

I sprained my ankle a couple of days ago.  I definitely didn’t need that on top of ALS.  I can barely stand anyway, and now right now I can’t stand at all.  So,  in the midst of feeling really sorry for myself,  I get on Facebook and see that it is my friend Tammy’s birthday.  My friend who has ALS AND cancer.  My friend who has learned she probably won’t be here this time next year.  Now,  she has been given an expiration date before,  with ALS,  and proved that doctors don’t know everything by living way past that date.  But,  cancer is trying it’s best to do her in.  So,  what’s a sprained ankle??!  Why was it again that I was feeling bad?  

No matter what your problem is,  someone out there has got more to deal with than you do,  I guarantee it!  Whatever problem you have,  don’t dwell on what you’ve lost or what is wrong.   Focus on all that you have.  No matter how much or how little.  If you can read this, you have more than so many people in this world. Take a couple of minutes and just think about all the good things you’ve got going for you!  For, one,  you obviously woke up today.. boom… blessing number one!  You are breathing… boom,  blessing number two. I could go on,  but you get the idea.  Don’t forget about all those little things like just breathing,  or talking,  or moving around,  or having food to eat.  They don’t come so easily for everyone.  

19. Life’s Been Good To Me So Far


Joe Walsh was spot on with his song, “Life’s Been Good  “.  I would say, for sure, life’s been good!  Except, I guess, for the whole ALS thing, and the golf ball sized kidney stone, that wasn’t much fun.  But we are focusing on the good stuff in this blog post.  If you listen to the lyrics, they say,

I can’t complain, but sometimes I still do.  Life’s been good to me so far.

I think it’s okay to do a little complaining.  My blog posts may not show it, but I probably meet my quota on complaints most days.  Just ask my kids, I’m sure they would say that I am a complainer.  The trick is, to know when to stop your complaining and thank your lucky stars.

I think Lou Gerhig got it right too, when he uttered  those now infamous words,

 “Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.”  

Lou Gehrig realized how many good things he had going in his life.  It’s all about being grateful for what you have. No matter how little you might think you have going for you, start listing it all and it will add up faster than you might think.  Oprah suggests you keep a gratitude journal. Write down something , or a few things, every evening that you were grateful for that day. Gratitude for what you have can change your life. Not just your outlook on life, but your entire life. A Course In Miracles says, a miracle is when a shift in your outlook occurs.  That’s how a person, who is supposed to be dying of cancer, can be truly happier than their neighbor who has their health and enough money to last a long lifetime.  My outlook has definitely shifted in the last several years.  I went from, “Oh no, I have ALS” to, “Yes, I have ALS”, to, “Oh yea, I have ALS”.  I consider every single day I am still here a miracle, and try to focus on life and not ALS.
Gratitude is one of the best gifts you can give yourself.  What are you grateful for today?

18. Use The Good China


My mother has a set of china in her china cabinet that I don’t ever remember her using.   I’m sure she must have used it at some point, but I don’t remember ever seeing it out of the cabinet. We all seem to want to save things for a special occasion. But, I guess nothing ever seems special enough. Or maybe we just forget we have that good china because we never use it.

I have a set of real silver flatware that my grandmother gave me years ago.  I use it at every birthday party and every holiday dinner.  I don’t think I own any item that I wouldn’t use,  aside from my great grandfather’s pipe.  It has been well used, but not by me!

Everyone has something they are waiting to use or waiting to do. Waiting until the kids are grown, or the puppy is housebroken. Waiting until they’ve received that promotion, or until retirement. Waiting for something that may never come, or at least not in the near future.  Why wait?

The same goes for indulging. You don’t order the dessert after dinner, because you feel like you really shouldn’t. You buy the kids each a new pair of shoes, but pass on a pair for yourself. Certainly if you are trying to loose weight, you probably want to skip dessert. Or , if you can’t afford another pair of shoes, don’t buy them. But, treat yourself in some way.  Stop saving, stop waiting! Make an ordinary day special by using the good china, and what the heck, use the good silver too! Take that cruise this year. Don’t wait for retirement. And, open that special bottle of champagne even if you don’t get the promotion. Your life is now!

17. Mirror, Mirror On The Wall

Mirror, mirror on the wall. Can I pass for normal, at all? Most of us grow up with a sense of what it means to be normal, to be accepted in society. We attend school, and are taught to behave a certain way.  We want to be liked by others and to fit in.  I was  lucky enough to have friends who, like me, liked to think outside the box. All of those stares I received in my younger years due to my not so normal hairstyles and clothing choices, helped prepare me for the stares I would receive later in life, post ALS.  Using a walker or wheelchair is a sure way to get a second glance out of nearly everyone.  Add to that a leg brace,  a neck brace,  or ventilator,  or whatever you happen to need to carry on, and soon you have the entire world (or so it seems) staring and wondering what the heck is wrong with you.  You might need to adjust your sense of normal,  or just forget about trying to fit the normal mold altogether.   When you are no longer doing your own hair,  your voice sounds different, and nothing seems to fit right on your sunken in shoulders and chubby stomach, (all common if you have ALS) it can make you feel like you don’t look quite like your previously  normal self.  And, you probably don’t. But, so what? And after all, what does it mean to be normal anyway? Is being married for 31 years normal? Is being happy almost everyday, even though you’re living with a terminal illness (and isn’t everyone technically terminal anyway) normal?  Probably not. So, it seems  like maybe I’m just destined to fall into the Abby Normal (Young Frankenstein fans) category.  And, it does secretly make me feel better when I am out and about and notice people I know who look quite bad, even though there’s no reason they couldn’t have combed their hair and put on a clean shirt before they went out to dinner.  I know that’s really horrible of me, but if my hair looks terrible, it’s because I can’t use my arms and rely on my husband to style my hair. If their hair is a mess, it’s more than likely because they just don’t care.  And why am I so concerned about how I look anyway, you might ask?  I know, it seems like I might have much more to worry about, but I feel like I should have little cards made that I can pass out (I don’t know how …you know with the whole non working arms problem) that say something like, “Please know that my wonderful husband has helped me get dressed and fix my hair because I have ALS and can’t do it myself. If I could, I would be wearing matching, stylish, well fitting clothes, have my hair styled and makeup on.  Fortunately for me, my husband thinks I always look great.  Unfortunately, like most husbands, he is often wrong. LOL ”

I try to remember, and take, my daughters advice.  She always says, you are never going to see any of these people again, so don’t worry about what you look like.  She is usually right.  Although, sometimes I think she says that to get out of doing my hair or makeup!  I sometimes go for weeks without ever even looking in a mirror,  and it’s amazing how   when you don’t know if your hair is a mess,  or if you might look better with a little make up on how much better you feel about yourself.  If I don’t know about the spinach in my teeth,  I can’t worry about smiling and someone noticing it.  Right?  That being said, if that ever happens, please just tell me,  “Hey,  you need to floss”!   Life is too short to worry about anything, and in the grand scheme of things, if you are happy that’s all that really matters, right?

16. Get Your Own Bed, Goldilocks

Sometimes sleep can be elusive, especially if you are dealing with a serious illness. These days it seems like almost everyone has trouble sleeping . Just look at all of the TV commercials for mattresses to help you sleep, There are adjustable mattresses that separately adjust the firmness of the mattress and even raise and lower at the top and bottom of the mattress, allowing both people using the bed to customize for their own comfort. I am starting to think Rob and Laura Petrie had the right idea with separate twin beds. It’s hard enough to find a bed, mattress, pillow and blanket combination that works for one person, let alone two people! Remember Goldilocks? She tried out three different beds before she found one she felt comfortable using. Even the size of beds has changed over the years as people sought out a more restful nights sleep. A, somewhat small, double size was the standard for years. Then came the Queen, the King, and the ultimate, California King.

I was hospitalized for a few days after surgery for a kidney stone, and the bed I had was amazingly comfortable. Of course it was fully adjustable, and the mattress constantly shifted with inflating and deflating air. It was like sleeping on a cloud.

Sometimes, no matter how much size and comfort you squeeze into a bed,when you don’t feel well, or have trouble sleeping, sleeping alone is your best bet. I would say that people who have ALS make the best bed mates. We can’t toss and turn all night, and can’t steal the covers. The only drawback is, if you toss and turn and steal our covers, you will be up all night constantly readjusting our blankets and body parts when you accidentally move them. So far, my husband and I have made do with our queen sized bed using a memory foam mattress and separate blankets. The memory foam mattress reduces (somewhat) movement from his tossing and turning. The separate blankets are a big help. We should have tried that years ago. I don’t have to worry about my covers moving every time he moves, and we each decide how many or few blankets we are comfortable using.Experiment to find what works best for you, and don’t be apprehensive to go it alone. You may have the best nights sleep you’ve had yet.

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.