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!


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?

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.