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!


59. Felix and Oscar

Some days I feel like Felix Unger, living in Oscar Madison’s house.  It’s not that I am living in a dirty house, but messy.  I do have someone clean for me,  but she spends hours just sweeping,  dusting,  mopping,  etc… She doesn’t have any time left to pick up the things that are just clutter.  So, I still end up with laundry baskets full of clothes sitting around the house, piles of old mail covering the kitchen table, empty containers and bottles all over the kitchen, piles of recycling waiting to be recycled, etc… I could go on.  Whenever we are staying in our tiny house (motor home), even the smallest messes seem huge.  When I was able to clean up on my own, was my house neat as a pin?  My memory says, yes, usually.  Magic Eight Ball says, not likely.  I kind of enjoyed cleaning back in the day, at least that’s how I remember it now, it’s been quite awhile.

Living with ALS gives me plenty of time to just sit and look at my surroundings and, thanks in part to my background in art and visual merchandising, notice every little thing out-of-place.  I wouldn’t say that I am a neat freak, but looking at things that need to be put up and not being able to do anything about it is enough to drive a person crazy!  I try to help by clearing out the clutter and selling or giving away things I don’t use.  But, sometimes I feel like when I clear off a surface so that it’s neat and tidy, I am only making more space for the clutter that inevitability appears!  Although,  after thirty years of collecting antique and vintage items,  it’s time to let some of them go.  This has also provided me with something to keep me busy during the day,  so as not to spend so much time observing messes.  Check it out, if you are so inclined (I don’t talk this way outside of my blog),  it’s my Etsy store,  Zuzues Petals.  Anyone catch the reference?

I am getting better at remembering that in the grand scheme of things, a messy house is not a big deal. I am a work in progress.  Some days it bothers me less than other days.  Maybe I should embrace the messiness of it all.  After all,  I do consider myself something of an artist,  and aren’t the best artists messy and eccentric, and don’t follow the rules?  I am not sure why this tiny thing seems so important.  Maybe it’s inherited, my grandmother’s house was never a mess, and she was a very good artist. She even made her bed every day and never let a dirty dish sit in her kitchen sink. Maybe it’s just another ability lost as a result of ALS, and that’s why it’s so important to me.

If you are,  or have been,  dealing with a serious illness,  you will likely know what I am talking about.  If not,  thank your lucky stars.  I guess it’s just another lesson to learn,  I should be grateful to have a home filled with stuff.  And,  grateful for all the clutter that fills my home.  Lesson learned.

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.