Well, it’s that time of the year when everyone reflects on their year’s journey and ponders what they’d like to accomplish in the coming year. Most people, it seems to me, are under the illusion that their accomplishments will lead to happiness in their lives. Maybe to an extent that’s true, but only if you are enjoying the path you’re on because the journey is what life’s all about.
That becomes really clear, really fast, when you’re diagnosed with what doctors consider To be a terminal disease, like ALS /MND. Suddenly, the journey is all you have. Medical doctors/scientists tell us PALS that time is up with a diagnosis like MND. Do NOT pass go and do NOT collect $200! Whatever destination or accomplishments you had planned on will no longer be possible. They are wrong… but, that’s a whole other story!
“It is good to have an end to journey toward; but it is the journey that matters, in the end.” – T.S. Eliot
Understand this… we should all be enjoying our journeys because the journey is really what it’s all about. We’ll never be satisfied with what we have, we’ll always want something more, or different. That’s just the way we’re wired. Sometimes that can cause problems, depending on how much you buy into the need to acquire the latest and best shiny new bobble that comes out, but, in general terms, it’s okay to always want something. If you were totally satisfied with every aspect of your life, what would be the point? Even if you don’t feel the need for “things”, you should feel the need or desire to do or accomplish something. We should enjoy each and every day as much as possible. Not because it might be your last, because it won’t. I guarantee you will wake up somewhere tomorrow. Will it be where you are today? I don’t know. Again, that’s a whole other story.
Embrace the possibilities of each new day and try to have fun in the process. Even the potholes and inevitable detours will lead you to new adventures you would have otherwise never taken… it’s all about the journey!
Sing along with this 90’s European techno music (but just the chorus, some of the lyrics are shabby-LOL)! They sing about no limits… there are no limits to the things that we can accomplish. No limit to our abilities. None! Let that sink in for a moment!
It was not that long ago that running a mile in only four minutes was thought impossible for a human to achieve. That is until Roger Bannister came along and did it. Once people realized it was possible, more people began running the four-minute mile. Now well over 1,700 people have been able to run a mile in four minutes or less. The fastest so far was timed at 3 minutes, 43.13 seconds, a record held by, Hicham El Guerrouj. I wonder how long until someone runs a three-minute mile?!
If there are truly no limits to our abilities, the impossible becomes possible. We just need to find a way to accomplish whatever it is we want. Just knowing that it is possible, is half the battle. A quote from one of my favorite speakers, Esther Hicks speaks of our healing limitations,
Someone asked us recently, “Is there any limitation to the body’s ability to heal?” And we said, “None other than the belief that you hold.” And he said, “Then why aren’t people growing new limbs?” And we said, “Because no one believes that they can.”
Excerpted from San Rafael, CA on 2/27/99
Could you even imagine… GROWING… a new limb?!! I have read about people who had an organ removed, only to find years later that they somehow have the organ again. It’s common for a liver to regenerate to full size after a portion is removed, which is how they can remove just a portion of the liver for transplant surgeries. We often forget that the skin is considered an organ, which regenerates whenever you have a scrape or cut. Maybe one day, growing a finger or a gallbladder will be as common as growing new skin!
We continue to push the boundaries of what is possible. What will you achieve knowing there are no limits?!
If you are a regular reader, you know, thanks to ALS I don’t get out much, especially since Covid. I saw many PALS (people with ALS) get very sick, even die, after getting the Covid vaccine, so I opted not to get any. I just hunkered down with Leslie Jordan and waited it out. I decided to take a different approach when it comes to protection of all kinds. I turn to Spirit.
Whenever I go out, I ask Arch Angels Raphael and Michael to place a bubble of protection around me and whoever I’m with to keep us safe and healthy. A zone where no germs can enter, and no harm can come. The last time I did this, I was already in the van and we were on our way to town. I started my silent prayer, and before I could even finish, a semi-truck and trailer turned in front of us as we waited at the stop light… painted on the trailer was a huge angel holding a large shield. I took that as a sign that we would be kept safe and remain healthy, and there was no need to finish my request… I said a silent, “Thanks.” I didn’t even think to look for a brand or company name on the truck, I have no idea what they were hauling. I was just so surprised to see the giant angel… and at that exact moment… because I’m certain I have never seen an angel on a truck before!
We went to TJMaxx that day shopping. Shopping is something I have only done a couple of times since Covid. My breathing abilities have taken a turn for the worse in the past couple of years. Going anywhere is no longer easy because I need to use a BiPap machine to help me breathe most of the time, and it is a very heavy and cumbersome piece of equipment to carry with you. So, we shopped for quite a while, then my headache let me know I probably needed to use my bipap to reduce my CO2 buildup and take a deep breath. So, my daughter took me out to the van and got me set up on my bipap so she could go back in and purchase our items. It was an unusually warm day, so she turned the air on in the van and went into the store. It didn’t take long before I began to wonder if turning on the van was a good idea. I was in my wheelchair in the back of the van, and I literally can’t move. The van was unlocked and running, sitting in a parking lot in Muncie, Indiana… not exactly the safest city in the state! Anyone could have jumped into the van, probably not even seeing me in the back, and taken off! But, I remembered the picture of the angel on the semi earlier that day and trusted that I was being protected. Many minutes later, we were on our way home, with no problems!
It was a great day out for us all, we made it home safely, and days later no illnesses either. I will continue to rely upon and trust in God/Spirit /Arch Angels for my health and safety. Spirit is always available to help with whatever you need, all you have to do is ask and watch for the signs!
Few words can change your life as much as hearing “incurable” can. A few of you reading this know what that’s like to be told that you have ALS/MND, a disease with no cure….. or a host of other equally terrifying diseases. Some of you are unlucky enough to be given an expiration date as well. Usually with ALS/MND, you’re told you have 2- 5 years left to live, then you are sent on your merry way to figure things out on your own. You might be given a referral for another similarly appalling opinion, or maybe a follow-up appointment. If you’re really lucky, you might have been given a booklet and maybe a phone number or website address for the local ALS Association or MND Association. What the doctors usually forget to tell you is that it is possible to live with an “incurable” disease, possibly get better, or even reverse your symptoms. No one tells you that just because the disease is incurable, that doesn’t mean that you are… YOU are never incurable!
They also almost never tell you to go home and live your best life. To keep living! Instead, you were probably told to make your final arrangements or to go on a vacation, before it’s too late… if you were told anything at all. So, you are left with no hope, no cure, no future, and no knowledge of what to do next. If you’re like me, you wasted a lot of time just trying to come to grips with what was happening, floundering like a fish out of water. Lucky for me, I had two young daughters, so I didn’t have a lot of time to waste. My daughters still needed all the same things they needed before my diagnosis, so my life went back to the usual routine pretty quickly. After a few days off of work, I decided that I didn’t want to spend what little time I had left spent working, so I turned in my notice. But, it wasn’t long, and I also realized that I didn’t want to just sit around and wait for ALS to take my life, so back to work I went, although this time just part-time.
I got busy living my life, being married, raising two daughters, working part-time, and the rest of the time searching for the elusive cure for what ails me. Researching on the internet was different back in the late 1990s and early 2000s, there wasn’t much news out there about alternative treatments for ALS. But, I found enough and I tried many. There were just a few survivors I had found, and that was enough to give me the hope I needed to keep going. So, I tried treatment after treatment. For my husband and I, a weekend getaway always included visiting an alternative medical professional to see what they had to offer in the way of treatment. We’d drive for hours, flying across the country at one point, and living there temporarily.
In between all of that, we lived a life that felt almost normal. Vacations were had, and trips were taken. Concerts were attended, both the ones I wanted to go to and the ones you go to to watch your kids perform in…you know the ones! School programs were attended, science fairs, art shows, plays, etc… Pets, both cats and dogs (also a few fish) filled our lives. Gardens were planted, and thanks to having two kids (who hated weeding), they were maintained. My life was busy. Normal for us was one of my daughters driving my electric wheelchair for me, when I could no longer do it, and helping me eat my meals. The child helps the parent when it should be the other way around. Once my oldest could drive, we would hit the mall on the weekend, my two girls getting me in and out of our van in my wheelchair. Driving me through the stores, dodging garment racks in the stores as they maneuvered my wheelchair, me with a pile of clothes on my lap up to my chin of things they wanted to try on. My daughters arguing about which one of them is driving mom and which one will have two free hands to shop, and will my chair fit in the dressing room. And, why do I have to go in anyway? Couldn’t I just wait outside the dressing room!?! Aaahhh…. those were the days!
Before I knew it, years had passed, and I was still here. Then decades passed, and I was still here! Sure, I had progressed, but I was still here!!! Just last month, I went to see my pulmonologist, and he said, .”… And they are sure you have ALS?!” “Yes, that’s what they tell me”, I replied. I told him that actually, I know of many people who have been diagnosed with ALS / MND over twenty years ago. I didn’t mention that I also know of several people who have reversed their symptoms. Like most physicians out there, I don’t think he’s ready to accept that yet. One thing those long-term survivors have in common is that they have all continued to live very full lives after being diagnosed with ALS/MND, adapting when necessary. They have found a way to ignore the disease as much as safely possible and keep on keeping on. Whatever you’re dealing with in your life, I would encourage you to do the same. Your life may change, it might look different than you’d planned, do what you need to adapt, and don’t let life’s problems stop you from living your life! Keep on living!
May is ALS awareness month. ALS has taken much from me. It has also provided me with a lot of lessons. Today, I am thinking about how it has made me aware of the lives of our pets.
I have a lot in common with my dog, thanks to ALS. We both rely on people to care for us. To provide us with food, shelter, and comfort. To bathe us, to take us to the bathroom. We both have difficulty communicating with people. Maybe that’s why I’m the one my dog comes to when he really needs something. He knows, I get it. He also knows I can’t do anything for him, physically. After all, I have never once been able to pet him on my own, without the help of someone else holding my hand out to stroke his unbelievably soft fur. He knows I will not (usually) ignore him. I just seem to “know” what he’s trying to tell me with his whimpers, whines, and, especially in his old age, barks. I just know when he really has to go to the bathroom. You’d think he would go to the door and scratch at it, or bark for attention, but why do that when you have a mom just sitting there waiting for you to complain to her!? I know what whine means he is hungry. I know when he is barking at me, what or who, he is complaining about. I tell him I understand, and I will tell “dad” when he comes back inside from whatever he is working on outside. Then, my dog, Bailey, is fine… he lays back down, and, like me, waits for someone to provide him with what he needs and wants.
Sometimes I think we are a little too connected. Our dog, Bailey, has gotten into the habit of “telling” (barking at) me all about what he thinks no matter what time of the day or night… if I am awake or sound asleep… he comes in the bedroom, yelling about the latest thing that is bothering him and waking me up in the process.
We don’t need to speak the same language to understand each other, thanks to ALS. So while I still am ready for a cure, and not just a treatment that provides most people with a few extra months of life… which is all they have come up with so far… it hasn’t all been bad. After all, that’s what disease is for, to help us learn a little something, and hopefully move on to live another day. That is what I am doing anyway. If you’d like to help out, feel free to donate to one of the truly wonderful groups out there that provide those of us living with ALS with what we need. Or a group that is working hard to find a cure. If you want to understand ALS, pay more attention to your pet, and don’t ignore them when they “talk” to you.
The power of music is easy to recognize. Have you ever heard just a couple of notes from the beginning of a song, and you immediately know what song it is? You may immediately think about what movie that song was in. Or you might remember a particular time in your life that will forevermore be connected to that music. All you need to do is listen to a favorite song, and you’ll notice how your mood is instantly altered. You can hear a song on the radio, and your mind may suddenly be filled with memories of a special time or specific person. Not only the memory but also the feelings you connect with the memory. Bringing about happy or joyful feelings, in turn, can bring about healing for your physical and mental body. Musicians understand the healing power of music perhaps more than anyone else. Musician John Lennon used certain frequencies and tones when writing music because he believed they held healing powers. The song, Imagine, is an example of a song that he wrote to provide healing to those who listened to it.
Do It For The Love, is an organization that grants live music experiences to anyone dealing with a life-threatening illness, also children with severe challenges, and wounded veterans. Singer and musician, Michael Franti and his wife Sara understand the healing power that music holds. Not just music, but specifically live, in person, music. They began giving grants to see live concerts when Hope Dezember contacted them on behalf of her husband, Steve Dezember, who was living with ALS/MND. Michael and Sara not only made it possible for Steve and Hope to attend a Michael Franti concert but got them up on stage and made it a dream come true type of experience. The rest, as they say, is history. To date, 2,700 wishes have been granted, and the healing power of music has been felt by 12,000 people! If you are living with a life-threatening illness and would like to experience the power of music, contact Do It For The Love to apply for a grant wish.
Cheryl Jacques (BFF), Pat & Amie Thornburg, Rick Springfield
I had a wish granted and got to go see a long-time favorite of mine, singer, artist, and musician, John Mellencamp. I am no stranger to concerts. I went to my first concert (Rick Springfield) with my BFF in high school, and I fell in love with live music. After my ALS diagnosis, my best friend from high school made it her mission to get me to as many Rick Springfield concerts as she could and made sure that I was able to personally visit with him at almost every one of them. Some of those concerts were real adventures for us. One included a weekend in Las Vegas and seeing 2 shows with Rick Springfield. He was our favorite singer in high school, and we had fun reminiscing at every concert. I think we have seen him 9-10 times now! Over the years, I have seen approximately 45 music concerts (not including school band concerts of both mine and my kids) and have seen/heard at least 100 singers perform. Music has always been part of my life. I come from a musical family. My mother was always musical (still playing the harp and hammered dulcimer at 81). I have Grammy-nominated relatives on that side of my family.
After I had lived with ALS for several years, actually going out to see a concert in person got a lot more difficult. Going to a concert requires a lot of planning. Is there wheelchair-accessible seating at the venue? Where is the wheelchair seating (I have been to concerts where the security guard actually had to stand by me to keep people from standing in front of me and totally blocking my view)? Where is the parking? Going to a concert usually requires me to reduce my liquid intake that day, depending on the restroom situation. It requires a bit of packing. I’ll need my wheelchair, blanket, water, straws, meds, kleenex, pillow, and now we can add BiPap (breathing) machine to the list. It’s not easy, but it is very worth it! When you find yourself with a singer like Rick Springfield testing out the strength and structure of your wheelchair before the concert, so he’ll know if it can handle him standing up on the arms whilst he is singing…. you do what you’ve got to do to make it to yet another concert!
Besides just the fun of a live concert, there is an energy to a live music performance that is unlike the energy of anything else. It is a healing energy. Listening to music allows you to move into the energy of the music and away from the energies of everything else. Away from your problems, and worries. Away from your health concerns, even if it’s only for a few hours. There is a feeling of joy in the air at a live music concert. Sometimes you feel as if you could almost reach out and touch it! It is also next to impossible to listen to music that you really enjoy and be in anything other than a good mood. When your mind and body are relaxed, happy, and enthralled in the power of music, that invites healing of all sorts into your body. Both physical and mental healing. Combine all of these ingredients, and magical things tend to happen when you regularly listen to music.
Music is something people all over the world have in common. We generally listen to music for entertainment purposes. I believe our ancestors were much more in tune with life and understood the power of sound and music and used it for more than entertainment. There are some people who believe that is how the pyramids in Egypt were made, by harnessing the power of sound to somehow move all those gigantic stones around. A knowledge that has been lost with time. In ancient Greece, Pythagoras was convinced that certain sound frequencies had a healing effect on the human body, and should be used daily to keep the body healthy.
The American Indians used music and its power to connect with spirit and help in every aspect of their lives. Whether they were about to go into battle, plant crops, pray for rain, or someone needed physical healing, they turned to music to help. Doctors today use sound to break up kidney stones. Certain frequencies have been proven to alter the chemistry in your body and brain. Instruments like tuning forks and singing bowls are used to create tones that are used in meditation to bring about peace and promote healing. There is nothing more relaxing than listening to someone who knows how to play a singing bowl. Jeralyn Glass is such a person. Her YouTube channel is called Crystal Cadence, and I would recommend you check it out.
Some science suggests that each organ has its own sound and producing and listening to the correct tone can bring unhealthy organs back to a healthy state. The Sound Pharmacy believes this and offers recorded sounds to help your body on its path to healing from all kinds of illnesses.
This only touches the surface of sound, and music, and how they can affect healing in our bodies. Scientists are discovering more and more about the power of music, a knowledge our ancestors possessed and used much more than we do today. I invite you to explore music for yourself and experience its healing power.
It may be time to review long-held beliefs. We often grow up believing certain things because that’s what our parents, grandparents, or someone close to us believed. It became second nature to us, and we have never stopped to think about “why” we believe it, or if it is actually so. Our beliefs may hold us back in serious ways. “I’m not good enough…. I’m not smart enough… The doctor knows best… The disease is incurable, no one survives it.”
I grew up believing, like many of us, that when you are sick, you go to the doctor, and do what he says in order to heal. When I went to the doctor with symptoms of ALS/MND and was told he could not heal me, I found myself doubting my belief that a doctor always has the answer. Could it be that my parent’s belief that the doctor always knows best was misguided? If not, he was telling me I would die within 2-5 years. If my belief was wrong, there was a chance I could live longer. My belief quickly changed! Unfortunately, I believe many people accept whatever a doctor says to be true with no exceptions because they have been taught he/she is an authority when it comes to health. Their belief that the doctor knows best keeps them from the possibility of healing, and can even cause their bodies to follow the doctor’s orders when it comes to ALS /MND, and only live 2-5 years.
This goes for all areas of our lives, not just health. Take some time to look at your beliefs and determine if they are your own, or were you taught that at some point in your life. If you realize a belief isn’t your own, but something you grew up believing, it can be easier to pinpoint what you really think, which could make a big difference in your life!
We spend too much time coming up with problems that don’t exist. You buy a new house, only to find out you aren’t happy with it. The cord on the lamp you have in your living room won’t reach the outlet from where you have placed the end table it’s sitting on (wow! Did you follow that?!). Also, the laundry room isn’t as big as you thought it would be after you added in your washer, dryer, ironing board, and dirty clothes hamper. So, you go over and over this all in your mind. What will you do? Move again!? Maybe move the couch and the end table? Buy a new lamp with a longer cord? But, you really like that lamp, it’s an antique you bought at that little shop three years ago on vacation. Maybe just an extension cord would do the trick. But, that would look tacky! You don’t want the extension cord laying there where everyone can see it. Oh, who cares! But, then there’s the problem with the laundry room! It’s just not that big. You didn’t measure your washer-dryer combo before you bought it to put in the new house, and it just takes up so much room! Maybe you could still exchange it? Sure, everything fits with room to spare, but you decided it doesn’t look “right”.
Or maybe you have a problem with the clothes you just bought, and they don’t look as good as you thought they would with the shoes you have chosen. Or visa versa., your shoes don’t look as good as you thought with the outfit you just bought. You could buy new shoes or a whole other outfit. What to do, what to do!?!? You spend so much time going over it all in your mind, that you don’t even realize that you are the one who made it all wrong, to begin with! You are the one who decided it’s all “wrong”! You are the one who went over and over it in your head, in a conversation with yourself to decide it’s wrong. No one else said I can’t believe you’re thinking about wearing those shoes with that outfit!
Our lives would be so much easier and we would be so much happier if we simply went with whatever was going on and worked with ourselves deciding to be happy with what we have. Happy with the choices we make. No one is saying you can’t change your mind and do things differently, but why make yourself wrong in the process?!
I didn’t come up with this idea on my own but am borrowing from Michael Singer. I am also not saying this always works. If you have serious problems, you might need to look in a different direction, but in general, for everyday anxiety, much of which we cause ourselves… just stop it! STOP finding a problem with everything! Stop arguing with yourself! Stop beating yourself up for past decisions or actions! Find a way to make it all alright. How do you do it? Spend more time congratulating yourself, and agreeing with yourself. Turn your thoughts around to be happy with what you have. Tell yourself that you don’t need that much room in your laundry room, it will work out fine. You never fold clothes in there anyway. You just need room to get to the washer and dryer, nothing else. You can give yourself permission to buy an extension cord for the lamp. Your outfit looks fine with the shoes you have. You love those shoes and don’t want to wear a pair of brand new shoes all night that aren’t broken in, and might be uncomfortable. Give yourself a break! Free yourself and see how much easier your life goes. How much more relaxed you are, and how much better you feel!
Just keep swimming, just keep swimming, swimming, swimming, just keep swimming! When life gets tough, we just keep going. Things are so tough right now for so many people. People are leaving everything they own and fleeing their war-torn country out into the unknown. Some people are too old or ill to flee and are just taking their chances that they will survive while losing all their friends and families who have left to seek safety. I have a friend battling cancer, I have a friend battling kidney problems, among other things. I find myself tired and worn out on a daily basis and I don’t remember what it’s like to actually feel good. But, I just keep going. Most of us just keep on keeping on. We have to keep the faith that there is a light at the end of the tunnel.
I just heard a story the other day about a man, back in the day, who was mining for gold. He was hoping that he would strike it rich. He had done a lot of work in researching where to mine, learning how to mine, and invested all of his money in buying the equipment he would need. He worked and he worked and he worked, day and night. He worked for years. He worked at his dream to strike gold until all the hope he had was drained from his body. He finally gave up. He never found gold. He sold all of his equipment dirt cheap to the first person who would make him an offer. The guy who bought the equipment thought it sounded like fun, but he didn’t know anything about gold mining. Not only did he buy the equipment, but he got the rights to mine in the same area, after all, that’s where the equipment already was. He worked at it and figured things out as he went along. It wasn’t long before he found his first piece of gold, just three short feet from where the original miner had stopped mining! THREE feet!!! He, of course, continued on and made millions from the gold he found in that mine.
You never know how close you are to your dream. Whatever you are searching for, be it gold or maybe the perfect job for you, or better health, or the partner of your dreams. Whatever it is, don’t give up. You might be closer you think. The only difference between the people who realize their dreams and those who don’t is who gave up and who kept going.
You may have heard a story about someone who was in a drive-thru lane at their local fast food restaurant (one of the five hundred local fast food joints) and pulled up to pay for their food, only to find out that the car ahead of them had already paid for their food. That is a fairly common scenario nowadays, thankfully. I recently read on a Facebook post where someone was saying that is great, but how about helping someone who really needs the help? This particular persons’ scenario involved a patron at Starbucks, his argument was that obviously, the person in a drive-thru at Starbucks doesn’t need to have their $8 coffee paid for, they can afford it or they wouldn’t be there. He was saying, spend your money on someone else, maybe put that money into the tip jar to help the person who served you. While I understand what he was saying, I think it’s sometimes less about the money and more about the act of kindness in the gesture itself that is important.
I think I have talked about this before but… once I was on the receiving end of such an act of kindness (well more than once) and it meant more to me than the person who covered the bill will ever know. My family and I were out of state, attending my grandmother’s funeral. It was the evening after the funeral. We had food of course afterward, provided probably by my grandmother’s church. We hadn’t felt much like eating at the time. But, after a long hard day, we thought we’d go out for a nice meal at our favorite steakhouse in the area. We weren’t particularly chatty that evening, other than a few laughs with memories that popped into our heads of my grandmother and something she had done with us or said to us. We had a very nice meal, and when it was time for the check, the waitress let us know that someone had paid for our entire meal, anonymously. She didn’t even know who had done it, she was told by another server that it was paid for by someone. We looked around and didn’t recognize anyone dining there. We were out of state, and the chances we would know anyone would have been slim. The cost for a meal for a family of four at a very nice steakhouse definitely was not cheap! The money we saved was a nice surprise, but the gesture of kindness on that particular day, at that particular time was priceless. Whoever paid for our meal wouldn’t have known that I just had one of the hardest days ever. They also probably wouldn’t have guessed how sad we all were because we had been laughing from time to time remembering stories from the past.
I remember another time in a restaurant, my family was eating out, and I was struggling to eat by myself, due to muscle loss in my arms thanks to ALS. This was a long time ago because I haven’t been able to do that in a long time. Well, when the people at the table across from us got up to leave, the gentleman stopped over by me and said with a smile, “I know it’s hard to keep getting out, but you just keep doing it!” He was right, it was hard. I have continued to do it, as much as possible.
When you help another person by paying for a meal, or a coffee, or an action of kindness, you will never know what that might mean to the recipient. It’s not just the money, but the gesture itself that means so much. You don’t even need to spend any money. Just a kind word can make all the difference. So, try to spread a little kindness this holiday season. Remember, what goes around, comes around. Give and you will also receive.
Incurably Happy Life 