As he strums his guitar, chords and melodies headed nowhere, I realize that my listening pleasure is based on hearing his "audible walk."
"Wanna take a walk?"
"Where?"
"Anywhere."
"Okay."
It's a pleasant time interpreting what he's seeing based on the tune he creates. Just pleasant? Yes, just as a walk meandering down a path is pleasant enough to take again and again. After all, a path can only be well worn because travelers must take it or because they choose it continually.
Were I to examine the path/tune too closely, I might not be enamored with its details. Instead, I trust it to take me somewhere or nowhere...the journey is truly the only destination.
"Ready to go back?"
"Okay."
"We should do this again."
"Yes, I'd like to do it everyday with you."
Sunday, October 8, 2017
Saturday, October 7, 2017
But You Look So Good
It's the time of year when my friends are taking part in the BikeMS treks across the nation. Although they love cycling, they sacrifice their bums to cycling 50+ miles to raise money in the hopes of a cure for MS (Multiple Sclerosis). So a big shout out of love to Mary Beth and Yvette. Your efforts are no small feat of support but a continual warm spot in my heart.
It's the only time of the year that I really urge people to look at this disease; if something interesting passes the news feed, I'll share it but mostly, I don't haul it into the daylight. Because I just don't want my friends and family to really associate it too much with me. Because the stories can be horrifying and sad and it seems needless to burden others with this chronic bitch that can't be cured. It just rises up at the most inopportune moments and in comparison to other diseases I just feel damned lucky that the "S" I pulled out of the barrel was MS versus ALS. I appreciate how lucky I am to have this auto-immune disease; it's not going to kill me but it will annoy the hell out of me and probably shorten my life...but so does lack of exercise and smoking! Smiles...I exercise and don't smoke.
In fact, after the initial shock upon diagnosis eleven years ago, I decided to make concerted efforts to keep the odds on my side. Oftentimes, I receive private messages asking how this happened to me because the sender is experiencing odd symptoms themselves. Yes, if you're reading this and was one of those MANY folks, I'm happy that I haven't heard back from a single one of you that you also have MS. And that is the absolute best news. Except some of you have told me that you've contracted some other auto-immune disorder and for that, I'm sorry. It seems to be the "trending" ailment in the news with a lot of study going into WHY so many of us have bodies that fight themselves.
MS means multiple scars and I have them on my nerves which sometimes makes me smile as I tell someone they're getting on my last nerve (rare because I'm kinda sorta nice) and I'm a jokester by nature. So I have scars that show up on MRIs as bright little stars that twinkle back at me while they destroy the myelin or fatty tissue insulating my nerves. After they've done their damage, they disappear except like just like in space, they evolve into black holes and that's bad. That means my poor old gray matter will never again be able to use that pathway to tell my body to do something. Fortunately, the brain is really good at finding alternate routes and if I participate in the process by being continually engaged in "brain active" pursuits, I can keep many trails open. Trailblazer. Yes, that's me. Sigh.
Although I was diagnosed eleven years ago, MS was already insidiously working on me. I just didn't know it and made excuses for the odd things that occurred. I still smile remembering that first occurrence which might make me a saint or just stupid for laughing about it now. I had arranged a night out with two friends, Mary Beth and Iva Lou, to see a musical. They hadn't met before so in the driveway as the two came together, I blanked on their names...both of them and just said, "Hey, you two introduce yourselves." They didn't know that they were also re-introducing themselves to me. I was rattled the rest of the evening but put it away as evidence that I must be over tired. And I was always tired, a hallmark of MS but also of young mothers with busy lives keeping their families organized and happy, etc. etc. I have a name for that strange incident now and it's become a real ass of an annoyance in my life. It's called Name Aphasia in the MS world but I have a few other of those aphasias popping up now. FYI if you want to explore it. Yes, it still rattles me as in the first time I forgot the names of my children or dear friends or any of the wonderful NAMES that I never want to forget. And NO, you don't have this type of aphasia even if you do sometimes forget someone's name. It's a chronic issue and I laugh it off in public as me being "menopausal" or "old" or...you get the drift.
I'm not a young mother trying to keep everything humming along but exhaustion is still my companion. And NO, you may be tired due to your life or your own ailment but MS tired is truly different. In the early years, I could nap it away, caffeine it away, just fight through it. Now, my body steps in and starts making parts of me numb if I don't stop to rest. That's kind of hilarious at times such as when I'm exercising and my knee just decides to stop listening. Or, regular stress and a bad angle can make body parts just turn off. My dentist has to prop my chair up periodically so my arms wake up which is annoying because really, that's when I want my mouth to go numb. Again, I try to laugh these instances away but the more they appear, the more I fret and often have to push myself into the world; I know how easy it is to convince oneself that "not doing" is the better option.
So I keep doing. A year ago, I took a fabulous trip to Australia and southern California. It was so wonderful and EXHAUSTING. My system took a hit for a few weeks afterward but it's always worth it. The key advice I was given by a counselor once: "If you want to keep moving...then you have to move." It's good advice for everyone. Stand up and move even if it's a shuffle for your body or your mind.
I've opened up about this because I want to put a familiar face to MS. Will it make you donate to an auto-immune cause? Maybe. Will it make you reassess your own health? Hopefully and if you need to make positive changes, please do so because even if you aren't having any issues now, one day you are going to have to struggle against something. Health is like that...fleeting in its instances of good and bad. Will this cause you to reconsider how you treat your friends with an ailment? Let's hope not until you have a conversation with them as in how they might want a change. They may not. I know I like how all my friends and family deal with me as an MS-er. They laugh and sometimes cry and still want to keep hanging out with forgetful me.
It's the strangers who say things like, "But you look so good" that give me pause or "I forget names all the time" or "I'm tired all the time, too" as if they might be rationalizing what is going on with me.... It's a defense mechanism because no one wants to see others suffering and we want to play down symptoms as being normal. MS isn't normal. But I smile and go on and no longer try to explain why it's different. Instead, I've written this in the hopes that when any of you see the cycling warriors at BikeMS on the roadways, in the parks or near your communities that you will at least stop and cheer them on. They're hitting the pavement for your friend and perhaps for someone even closer to you because sadly, auto-immune disorders are growing in their prevalence, not going away.
And we want it go away. Trust me. Because "I look so good" by fighting against this daily for eleven years....
It's the only time of the year that I really urge people to look at this disease; if something interesting passes the news feed, I'll share it but mostly, I don't haul it into the daylight. Because I just don't want my friends and family to really associate it too much with me. Because the stories can be horrifying and sad and it seems needless to burden others with this chronic bitch that can't be cured. It just rises up at the most inopportune moments and in comparison to other diseases I just feel damned lucky that the "S" I pulled out of the barrel was MS versus ALS. I appreciate how lucky I am to have this auto-immune disease; it's not going to kill me but it will annoy the hell out of me and probably shorten my life...but so does lack of exercise and smoking! Smiles...I exercise and don't smoke.
In fact, after the initial shock upon diagnosis eleven years ago, I decided to make concerted efforts to keep the odds on my side. Oftentimes, I receive private messages asking how this happened to me because the sender is experiencing odd symptoms themselves. Yes, if you're reading this and was one of those MANY folks, I'm happy that I haven't heard back from a single one of you that you also have MS. And that is the absolute best news. Except some of you have told me that you've contracted some other auto-immune disorder and for that, I'm sorry. It seems to be the "trending" ailment in the news with a lot of study going into WHY so many of us have bodies that fight themselves.
MS means multiple scars and I have them on my nerves which sometimes makes me smile as I tell someone they're getting on my last nerve (rare because I'm kinda sorta nice) and I'm a jokester by nature. So I have scars that show up on MRIs as bright little stars that twinkle back at me while they destroy the myelin or fatty tissue insulating my nerves. After they've done their damage, they disappear except like just like in space, they evolve into black holes and that's bad. That means my poor old gray matter will never again be able to use that pathway to tell my body to do something. Fortunately, the brain is really good at finding alternate routes and if I participate in the process by being continually engaged in "brain active" pursuits, I can keep many trails open. Trailblazer. Yes, that's me. Sigh.
Although I was diagnosed eleven years ago, MS was already insidiously working on me. I just didn't know it and made excuses for the odd things that occurred. I still smile remembering that first occurrence which might make me a saint or just stupid for laughing about it now. I had arranged a night out with two friends, Mary Beth and Iva Lou, to see a musical. They hadn't met before so in the driveway as the two came together, I blanked on their names...both of them and just said, "Hey, you two introduce yourselves." They didn't know that they were also re-introducing themselves to me. I was rattled the rest of the evening but put it away as evidence that I must be over tired. And I was always tired, a hallmark of MS but also of young mothers with busy lives keeping their families organized and happy, etc. etc. I have a name for that strange incident now and it's become a real ass of an annoyance in my life. It's called Name Aphasia in the MS world but I have a few other of those aphasias popping up now. FYI if you want to explore it. Yes, it still rattles me as in the first time I forgot the names of my children or dear friends or any of the wonderful NAMES that I never want to forget. And NO, you don't have this type of aphasia even if you do sometimes forget someone's name. It's a chronic issue and I laugh it off in public as me being "menopausal" or "old" or...you get the drift.
I'm not a young mother trying to keep everything humming along but exhaustion is still my companion. And NO, you may be tired due to your life or your own ailment but MS tired is truly different. In the early years, I could nap it away, caffeine it away, just fight through it. Now, my body steps in and starts making parts of me numb if I don't stop to rest. That's kind of hilarious at times such as when I'm exercising and my knee just decides to stop listening. Or, regular stress and a bad angle can make body parts just turn off. My dentist has to prop my chair up periodically so my arms wake up which is annoying because really, that's when I want my mouth to go numb. Again, I try to laugh these instances away but the more they appear, the more I fret and often have to push myself into the world; I know how easy it is to convince oneself that "not doing" is the better option.
So I keep doing. A year ago, I took a fabulous trip to Australia and southern California. It was so wonderful and EXHAUSTING. My system took a hit for a few weeks afterward but it's always worth it. The key advice I was given by a counselor once: "If you want to keep moving...then you have to move." It's good advice for everyone. Stand up and move even if it's a shuffle for your body or your mind.
I've opened up about this because I want to put a familiar face to MS. Will it make you donate to an auto-immune cause? Maybe. Will it make you reassess your own health? Hopefully and if you need to make positive changes, please do so because even if you aren't having any issues now, one day you are going to have to struggle against something. Health is like that...fleeting in its instances of good and bad. Will this cause you to reconsider how you treat your friends with an ailment? Let's hope not until you have a conversation with them as in how they might want a change. They may not. I know I like how all my friends and family deal with me as an MS-er. They laugh and sometimes cry and still want to keep hanging out with forgetful me.
It's the strangers who say things like, "But you look so good" that give me pause or "I forget names all the time" or "I'm tired all the time, too" as if they might be rationalizing what is going on with me.... It's a defense mechanism because no one wants to see others suffering and we want to play down symptoms as being normal. MS isn't normal. But I smile and go on and no longer try to explain why it's different. Instead, I've written this in the hopes that when any of you see the cycling warriors at BikeMS on the roadways, in the parks or near your communities that you will at least stop and cheer them on. They're hitting the pavement for your friend and perhaps for someone even closer to you because sadly, auto-immune disorders are growing in their prevalence, not going away.
And we want it go away. Trust me. Because "I look so good" by fighting against this daily for eleven years....
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