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.  

 

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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!

25. You Are Never Alone

I have a beautiful wooden clock that my grandmother gave me,  that was made by my grandfather.  It was a kit,  I’m sure.  A mantle clock,  one that you have to wind once a week to keep it going. It chimes on the quarter hour.  I love it,  because of who made it,  and the memories it holds.  I am not the best at keeping it wound.  Since I can’t do it myself (you know,  because of the whole ALS thing) ,  I have to remember to have someone else wind it for me,  and since I often forget,  this also means setting the clock.   You are supposed to set it by stopping every fifteen minutes to allow it to chime,  and then continue on until you reach the correct time.  This rarely happens.  Or,  one of the three spots it needs wound will remain unwound,  there’s always something,  and the clock gets off kilter and chimes the wrong number of times when it chimes,  or just doesn’t chime at all.  It may be two o’clock,  and my clock will chime ten times,  because we have screwed it up,  and it thinks it’s ten  o’clock.  Or,  it is quarter after the hour,  and my clock chimes as if it is half past the hour.  You get the idea.

I love clocks.  I have four in my family room alone.  I have another mantle clock that is much older,  from the late nineteenth century, and it also must be wound to keep time.  It chimes on the hour and half hour.  I have had it worked on,  and it keeps perfect time.  If you wind it properly.  We rarely do.  So,  as you might guess,  it is rarely chiming the correct number of times to match the hour it reads.  It is a real pain to reset a clock like this to get it chiming two times at two o’clock,  and three times at three o’clock,  etc…  But,  I noticed something odd not long after I started using my grandfather’s clock.  No matter how much we screw it up,  it somehow resets itself.  It may be midnight and it will  chime as if it is only 5:30,  because we finally wound it after days of letting it wind down.  And,  by the time I notice it chiming the next day, it has somehow corrected itself.  Weird.  Right?  There really is no explanation for it.  But,  I find myself , when it gets out of sync,  thinking,  “Grandpa,  you are going to have to fix the clock again because we messed it up.”  And,  before I know it,  it’s fixed!  A lot of people would say it must just reset,  but I know that just doesn’t happen with this type of clock.  I know that my grandpa is taking care of my clock for me.  Maybe it’s his way of letting me know that he is still around and checking in on me.  I kind of like knowing that he has been here,  and that I have someone watching over me.  I have always enjoyed my alone time,  but I also like knowing that I am never really alone.  So,  I am adding to this post,  the song that my grandfather liked,  and my grandmother used to sing,  back in the day.  Maybe I will play it,  and then wind my clock just enough to get it off kilter again,  and then wait for it to sync up!

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!

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?