13. Forget About It

Forget about it! Said in your best mobster (think Tony Soprano or Mickey Blue Eyes ) voice.  We live in a world where the things you focus on are the things that manifest in your life. Did you ever notice when you try and try to save up money for something you really want, how hard it can be? Your thoughts migrate towards your lack of money. Your focus on your lack of money continues to bring about a shortage of funds.

Have you heard the saying, “The rich get richer and the poor get poorer”. While it’s just a saying, there may be some truth to it. It is, after all, very difficult to think about anything other than your absence of money, when money is what you really need. It is much easier to envision always having enough money when you already possess money. Likewise with your health, and everything else in your life. The more you concentrate on something, the more you receive exactly
what you are concentrating on. So, if you are sick, the more you talk and think about your illness, the more it clings to you. If you no longer want to be struggling with something, forget about what you don’t have, and focus on how great you will feel when you have what you want. I know, that’s easier said than done, especially with health issues. You still have to deal with doctors, tests, treatments and medications probably on a daily basis. so your illness is on your mind often.

My favorite author, Pam Grout, offers a series of simple experiments to help us understand just how the universe works, in her book, E-Squared: Nine Do-It-Yourself Energy Experiments That Prove Your Thoughts Create Your Reality https://www.amazon.com/dp/1401938906/ref=cm_sw_r_cp_api_EHtwzbKFXBYSC

 She does a much better job of explaining things than I could, so I suggest you read her book.  But, the gist of it is that God (or whatever you prefer …Mother Earth, the Great Spirit, etc) is always listening and gives you what you are focused on in life.  So, we need to focus on what we want and forget about what we don’t want, i.e. probably your current situation.  Like I said, she does a much better job of explaining it. But I think she is spot on!  I have done most of her experiments, and have received everything from a bright blue butterfly to a seahorse, to a surprise credit of $24.85, to a write off of a student loan (a total surprise)!  

I don’t have this all figured out, I do, after all, still have ALS.  But, I try not to focus on that, and instead, focus on all the awesomeness in life and expect more amazing things to come my way.

Advertisements

6. Out Of Sight, Out Of Mind

May is ALS awareness month. In honor of that, I thought I would share a story of what it’s like to live with ALS. True story.

Have you ever gone to a doctor’s appointment and been left waiting for what seemed like forever? Waiting so long that you began to wonder if they had forgotten about you? What am I asking? If you are reading this blog then chances are, you have or had a serious illness and, this has happened to you more than once in your many doctors appointments.  If you rely on others for your caregiving, then know that at some point, you probably will be forgotten. Not on purpose, but it just happens. I’m not saying this to worry you, but so you can plan ahead, and perhaps prevent it from happening to you.

I was in the bathroom late one evening. Yes, on the toilet. After what seemed like forever , in fact 10 whole minutes (I have a clock right in front of the toilet), I yelled for my caregiver. No reply. I waited a couple of minutes and yelled again. Still no reply. Ok, so after 20 minutes I really started to get upset. Normally they would check to see if I needed anything after just a few minutes. I cannot get up on my own, so I am stuck waiting. After 30 minutes, I start to worry. Did they fall asleep? Maybe they fell down and got hurt? The scenarios start playing through my mind. My foot falls asleep, my butt is going numb, and it’s only been 40 minutes! I try yelling again. Nothing. I keep yelling. I yell for the dog. Nothing. Really? Not even the dog remembers I am stuck in there? Note to self; get a better dog. Maybe a Saint Bernard rescue type dog. Now I really start freaking out after 50 minutes of sitting on the toilet. I start trying to figure out when someone will be over next. My daughter is due over in 10 hours. Could I really sit there for 10 hours? After 1 hour and 5 minutes, the yelling paid off. My carer had fallen asleep, and finally woke up! Relief!

When, and if, you are ever forgotten, try not to freak out like I did. Maybe you can plan ahead to prevent it from happening. Maybe a clock in the bathroom isn’t such a good thing. Maybe I can try to finish up in the bathroom before midnight, when my carer is likely to be tired. Maybe I could train my body to go with someone else in the room (yeah, that’s not gonna happen)? You know, out of sight, out of mind! Maybe I can get that rescue dog, or maybe a helper monkey? Maybe someone could just find a freaking cure for ALS!

5. Poor Poor Pitiful Me 

While at a restaurant , my daughter and I were at the exit waiting for my husband to pay our bill. A man and his family entered the restaurant and saw us standing there. He immediately had a look of pity in his eyes and came over to me with an, “Awww…you poor thing…”, saying how sorry he was that I was in a wheelchair. He then went back to his family and continued to talk about that poor lady in the wheelchair! My daughter and I looked at each other and as the lyrics to Linda Ronstadt’s song,  “Poor Poor Pitiful Me” (Poor Poor Pitiful Me ) floated through my head, we both burst out loud in laughter! And, while I am really sure he thought he was being nice, the fact remains that he literally described me as, “that poor lady”. Wheelchair or not, neither I nor my daughter think of me in that way, and it just struck us as absolutely hilarious! There was a time when maybe I would have tried to contain my laughter, worrying about hurting his feelings, but not anymore. Sorry, not sorry dude, you met the post ALS me!

3. You Oughta Know 

This blog post seemed like a good one for all of the moms out there.  Happy Mothers Day!

When you are not able to easily make note of appointments, shopping lists, your kids busy schedules, etc., you rely on your memory. I am talking about when you physically can’t write anything down without the help of a switch or a computer eye gaze system, and not just because you can’t find a pen, or your phone. This is true for anyone who has trouble using their hands for whatever reason, but it’s  especially true if you are a mom. You should not only sharpen up your memory, but you will find that life is easier if you can practice your psychic skills as well. Because, believe me, it won’t matter if you are feeling so bad that you have been in bed for weeks, or if you haven’t physically been able to move your arms or legs in years… when your kid can’t find their left tennis shoe, or backpack, or whatever it may be, you will be the one they yell for. You are the one they will expect to help find it. So, if you can’t get up and go find it yourself,  you had better hope your psychic abilities kick in so that you can magically tell them where said item is located. Besides knowing where all personal belongings are located at all times, you will also be expected to know things like, are you out of Oreo’s? Do you have any orange juice in the fridge? It doesn’t matter if your wheelchair won’t fit in your pantry, or if you can’t physically open the door to your refrigerator. You are the mom and that means you ought to know.

This “you oughta know ” theory comes into play with husbands too. You may not be able to write a check, but you should somehow know where your husband put the checkbook. Also, are there any stamps left, and where are they? The list literally never ends.

What does any of this have to do with the Billy Joel video, you ask? Well, nothing, except that the lyrics, “you oughta know by now “, are in the chorus and kept running through my head as I wrote this.  Also, music makes everything more enjoyable!

So,  if you are dealing with a serious illness, you might want to start taking some Ginkgo Biloba. I  think that’s the herb that helps improve your memory. I probably oughta know that too.

 

1. ALS and Zombism…Pretty Much the Same

In the Netflix series, Santa Clarita Diet, ( https://www.youtube.com/watch?v=xjRnbOgoAUQ ) Joel and Sheila are two happily married realtors going about their business when one day Sheila gets sick. Very, very sick. I mean, throwing up sort of sick. A hilarious amount of throwing up. Long story short, Sheila is a zombie. She and her husband and daughter go on with their lives trying to remain as normal as possible, all the while becoming less and less normal. Watching this hysterical show made me realize how similar my life with ALS was to Sheila’s life as a zombie. Like Sheila suddenly becoming a zombie with very few symptoms beforehand, I also was just busy living my life when a few non specific symptoms led to an ALS diagnosis. Suddenly having ALS, as with becoming a zombie, just happened and no one knows why. Maybe a virus? There are plenty of theories out there, but no one knows for sure how or why it happens. Just like with ALS,.there is no cure for being a zombie With both ALS and life as a zombie, you go on living your life as normally as possible until your body stops working. With ALS, body parts give out. When you are a zombie, body parts fall off. With both “diseases “, the things you are able to eat change, although for very different reasons. With both, you may notice a change in your personality, again, very different reasons. With both ALS and zombism, your life and the lives of your family are forever changed. The good news is that, like Sheila, I’ve found that I can be happy in spite of living with ALS… or in Sheila’s case, zombism. We both take things in stride and just go on with our lives. I might suddenly notice one day that my little toe will no longer move or help my foot to bear weight, and Sheila (spoiler alert) might  suddenly find that her little toe is missing. But, what the heck, we still have four more on that foot, right? We shrug it off and just keep going! Zombies and people with ALS, we never give up!

Incurably Happy Life

I was diagnosed at 31 years old with ALS . Otherwise known as Lou  Gehrig’s disease . Remember all those buckets of cold ice water everyone was dumping on their heads a few years ago? Yea, that was , at least in part, for me. It unfortunately has not yet led to our miracle cure, but that’s okay. I have found out that I can be just as happy living without muscles as I can with them! Okay, maybe not “just” as happy , but pretty darn close. In case you didn’t know, that’s what ALS basically means…your muscles slowly, or quickly, quit working. It truly sucks.

I was diagnosed back in 1998 , so I have been doing this awhile. People who are newly diagnosed always ask us old timers what our secret is to surviving past the general 2-5 years prediction so many doctors hand out. So I thought I would use this blog to help in anyway I could to share what I have figured out over the years . Or, at the very least, give you a laugh and a few minutes to forget about your problems.

Warning:

I was not an English major. Ignore my grammar mistakes and typos..I am typing this with a switch and my eyes! I also went to school way back when our school first got computers, so I am self taught and don’t know much about setting up websites, so this is a work in progress. Hope you enjoy!