27. Find Some Hope to Hold Onto

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson

I had a great-uncle who was a postman.  He also happened to be a  healer and psychic.   I remember him and the wonderful conversations we used to have.   When I was very young,  somewhere between four and six years old,  we would sit in my aunt and uncle’s kitchen,  eat cookies and just talk.  It seemed very odd to have an adult sit and just talk to me and be so interested in what I had to say.  I loved to talk to him.  

One day,  a full year after I had been diagnosed with ALS,  I decided to look him up.  I hadn’t seen him in years.  He lived in a small community of psychics, healers, and mediums called,  Camp Chesterfield.   One weekend,  my mother and I found his address and drove over to see him,  but he wasn’t home.   So,  we visited the local bookstore, and the community office where I was given a list of all residents and their gifts (psychic, healer, medium, etc).  Since I was already there,  I thought I might as well try and get a reading.   So,  I had the office secretary call a lady listed as a psychic and medium to see if she had time for one.   She did.  I had never been to a psychic before, but it turned out to be exactly what I needed at the time.  She told me, among many other things,  that she had a message from my former pastor.   She wanted to tell me that my illness was just something I had to go through.  After months of tests, doctors, and doom and gloom, those few words were such a comfort and source of hope.  I just had to go through it… to me,  meaning there was hope of getting through it,  or living with it.   Reverend Clara Maye Rippel always knew the right thing to say!

I will never understand  why some medical professionals are afraid to offer what they call, “false hope”.   Hope can never be false. Sometimes all you need is a little hope to make a huge change in your life.  There are stories out there about someone who has survived every illness, and every terrible situation you can imagine.  If someone else can survive what you are going through, or worse, then you can too.  

 

Advertisements

26. Laugh. Even if you don’t feel like it.

 

Who says TV is bad for you?  I know I heard that somewhere.  Maybe it was just sitting too close to the television set that I was warned about?  Anyway, contrary to popular belief, I think television and movies can be good for you.  In the movie, What About Bob, Bob takes a vacation from his problems.  TV can offer a tiny vacation from your problems. A few minutes to laugh or solve a crime, and forget about that doctors appointment coming up,  or that test you have to take,  or whatever it is that you don’t really want to do.  And, for those of us who aren’t able to physically do much besides reading and surfing the internet, sometimes movies and television are all we have to keep busy.  Well  that,  and writing a blog will keep you pretty busy! 

When I could no longer do things with my kids that required physical movement of any kind,  watching TV was something we could do together. Each week when our favorite programs were on, they would actually come out of their rooms and spend a few minutes with their mother!  Even though they no longer live at home,  we still watch television and movies together.  My oldest daughter and I watch The Middle almost every week.  My youngest daughter and I try to catch up on Grey’s Anatomy most Friday’s when she comes over. 

The same day I received my third confirmation that, yes, I had what doctors considered to be a terminal, incurable, and untreatable disease,  my husband and I went straight to a movie theatre.  Why not, right? We both had the whole day off of work, why waste it being sad and depressed? I had, according to everyone “in the know” (neurologists), at the very least, a couple of years for that.   So, we went to see, There’s Something About Mary.   Definitely the most hilarious movie of 1998. So, when my mind would have normally been devoured by sadness, instead, I smiled and laughed for 119 minutes. Probably the best thing I could have done at the time.  

Now there are probably close to a million channels (okay,  not quite) to choose from,  streaming on Roku, Amazon Fire Stick,  etc..  Although there are way too many shows not worth watching,  there are some really great ones out there too.   You can now watch them anytime.  No more waiting all week,  or even all year to watch the annual showing of holiday programs or movies.   If you are stuck in a bad mood,  or feeling down, a funny movie or sitcom can be just the ticket,  to at least give you a break from the way you are feeling.  The more you can laugh,  the better you will feel.  I  promise.  Laughter  really,  sometimes,  is the best medicine.  So,  try it. The next time you are feeling down,  watch an episode of The Middle,  or find What About Bob on Netflix.   I  guarantee you will feel a little better!

24. It’s All About The Journey

This blog post is dedicated to my Facebook friend, and ALS warrior, Tammy.  May you be joyful as you continue on your journey,  no matter where it takes you.

 

Last month,  my husband and I traveled West in our new(ish)  RV.  We made a stop in Missouri,  then on one side of Kansas,  then the other side of Kansas,  then Colorado,  and finally,  New Mexico.  Then back home through Texas,  Oklahoma,  Missouri, and finally arriving in Indiana.  It was an adventure.  It was our first trip in the RV,  being the second owners,  so we found things we wanted to change,  and a few things we have to fix.  We had a travel trailer years ago,  so it was not all totally new to us,  but it was all new to our 95+lb., five year old Lab mix dog who we took with us.  He adjusted fairly well,  and loved his new bed,  and all the vacation food,  but  he preferred to squeeze into the 12 inch space beside the bed to sleep,  instead of his spacious  and comfy bed.  It was quite a sight.

We probably should have taken a shorter trip for the first trip out.  That way we wouldn’t have been clear across the country when we realized that we needed to order a new converter (don’t ask me what that is,  but apparently it’s very important).  But,  we did have an adventure!  It’s just that adventures aren’t always great,  amazing trips without a single problem.   We had to cut our trip short and come home early.  So our adventure  ended up being more about the journey, and less about the destination.   But,  isn’t that how it should be?   Isn’t that just life?  I had always wanted to visit New Mexico, so that was the end goal.   So many people plan on reaching some sort of goal and they are sure they will find enjoyment in the achievement of that goal,  like a new home,  or retirement.  But,  they end up just working themselves  into a serious illness,  or to death trying to achieve their goals,  planning to be happy one day in the future,   instead of just enjoying the journey and finding happiness in the every day.   I used to do the same thing,  until ALS woke me up and made me start paying attention to the journey and not just the destination.  Because you never really get to your destination.  You may achieve a goal,  but then,  don’t you just have another goal to achieve  (hopefully)?  And another?  And another,  and so on and so on, and it never really ends. I would say that even at death,  it is about the journey, because your trip has not ended, but just continues on in another dimension (otherwise known as  Heaven).  We usually refer to death as an ending.  But,  I know that we are really just living somewhere else.  There is no ending,  just the journey.  Many,  many religions believe that you take many journeys through more than one lifetime.  I am apt to believe this,  because how can a person accomplish anything in just one short lifetime?  I have trouble believing that God only gives you between one and one hundred short years to experience life in the vast amount of time of Earth’s existence, but… that’s a whole other blog post!  Do whatever you can to find enjoyment on your journey,  and don’t worry so much about your destination.  Enjoy each and every day.

 

23. Shake It Up

 

A popular song in the 1980’s,  by The Cars. Even if it’s just a song about dancing, it reminds me to shake up my life.  Whether we like it or not, life is all about change and shaking things up.  I was pretty happy with my life, just going along with my routines that are easy to get stuck in,  and necessary when you have children and a job, when BOOM…ALS shook up my life.  One thing about living with ALS, is that it causes constant changes in your life.  You are forced to adapt to the changes with the loss of each and every muscle.  I am still trying to accept that my life is constantly changing.  I am not sure why most of us have so much trouble accepting change.  Maybe because we usually view change as a negative thing.  But even a negative change can bring further positive changes.  If I had not been diagnosed with ALS,  I would have probably never cut back my full time job to working part time, even though that’s what I always wanted to do.   And,  probably never would have quit working all together.  I would have probably never taken so many wonderful vacations with my family either.  We would not have moved into a new house.  I would have never met the same people I have met in the past 19 years.  The list goes on and on

My husband and I recently purchased a new(ish) RV.  Being able to take long trips in the RV  will really shakeup our routine.  My new(ish)  blog really shook things up!  Shake things up, even if it’s in a small way.  I recently started spending more of my days sitting on my chaise in the family room using my iPhone, rather than sitting in my wheelchair in the computer room using my computer.  That small change has made my body more comfortable, given me a better view of the outdoors,  so I can spend more time bird watching and less time surfing the internet.   Do whatever you can to shake things up,  and learn to accept change and view it as a good thing.

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?

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.