It has been a long time since I shared with you.
To make the litany of symptoms short, nothing works, nothing helps. I'm either home bound or bed bound. I haven't left the property in months, mainly because the whole transfer between the chair and the car is basically undoable.
Many things might be said, but none of them will rely on the term "bounces," especially when the ground is involved.
Trust me, that's been tried.
Being unable to engage the world has been quite difficult. I've been able to give care to caregivers, primarily by listening.
I may still have things to offer, thought-wise, but simply doing that takes a hell of a lot of work.
I will tell you. though, that hearing "I can't" is one thing, but hearing "we don't need you" is hard. VERY hard. I spent years in anguish, figuring out that what was stuck in my head was a plea to "value me!" Well, if there's one thing I'm definitely not responsible for, it's someone else's enlightenment.
The high school I spent years working at is very bad at saying "thank you" and "goodbye." I never really got the first one, the second at best merits a snort. But it's only my own enlightenment that I'm responsible for, and being chair or bed bound provides an excellent excuse, if not an opportunity, to work on that.
I've hit the wall. Done for now. Peace be with you!
Tuesday, May 30, 2017
Thursday, April 13, 2017
So... why not?
Gift time.
So here I am, basically wheelchair-bound, and spending lots of time in bed.
So where are the gifts of MS, which after all were promised?
Being wheelchair bound, a "big thing" for me to do is to just go outside. It there, I see flowers I've never seem before. I see plants like thyme, artichoke, dandelion, lettuce, all sort of amazing things that just pop up.
A friend of mine visits to be the day's "caregiver" who meanwhile seems in distress and he, needs first, simply to be heard. That is easy to do, bed-ridden even. I listen. I suggest that he "find the funny." We laugh. We talk about rock-and-roll keyboard playing, his knowledge of which is easily PhD level. He finds things to hear on YouTube. I show him Rick and Morty. He tells me that simply knowing that this show exists blows away his now pretty-grown kids--that he, Dad, knows about the existence of that show? We laugh even more.
Listen and laugh. Good for anyone, MS or not.
I hear about this new amazing MS drug. It is compared by a reputable MS Society against rebif and tysabri, which my at-the-time MD (a very science-y guy, MD or no) ranked in the "you can't be serious" list of things to avoid religiously. Me, I'm sticking to cannabis; a knowledgeable caregiver (doctorate) tells me it's neuror-protective, and as a side effect helps me to enjoy being alive. And calms the spasticity, of which I have plenty. Really plenty, thank you for asking.
My wife constantly makes "kitty mommy" nuzzling of the new cat. Her joy, and this adorable little cat's obvious joy at simply being alive here, is really wonderful. Chair and bed-ridden makes these all even more wonderful.
My world is kinda small, geographically, but living in it is wonderful, and MS has shown me many before-unseen wonders.
Life is good. Thank you, MS?
So, why not. Gratitude and joy are definitely worth living...
MS or not.
So here I am, basically wheelchair-bound, and spending lots of time in bed.
So where are the gifts of MS, which after all were promised?
Being wheelchair bound, a "big thing" for me to do is to just go outside. It there, I see flowers I've never seem before. I see plants like thyme, artichoke, dandelion, lettuce, all sort of amazing things that just pop up.
A friend of mine visits to be the day's "caregiver" who meanwhile seems in distress and he, needs first, simply to be heard. That is easy to do, bed-ridden even. I listen. I suggest that he "find the funny." We laugh. We talk about rock-and-roll keyboard playing, his knowledge of which is easily PhD level. He finds things to hear on YouTube. I show him Rick and Morty. He tells me that simply knowing that this show exists blows away his now pretty-grown kids--that he, Dad, knows about the existence of that show? We laugh even more.
Listen and laugh. Good for anyone, MS or not.
I hear about this new amazing MS drug. It is compared by a reputable MS Society against rebif and tysabri, which my at-the-time MD (a very science-y guy, MD or no) ranked in the "you can't be serious" list of things to avoid religiously. Me, I'm sticking to cannabis; a knowledgeable caregiver (doctorate) tells me it's neuror-protective, and as a side effect helps me to enjoy being alive. And calms the spasticity, of which I have plenty. Really plenty, thank you for asking.
My wife constantly makes "kitty mommy" nuzzling of the new cat. Her joy, and this adorable little cat's obvious joy at simply being alive here, is really wonderful. Chair and bed-ridden makes these all even more wonderful.
My world is kinda small, geographically, but living in it is wonderful, and MS has shown me many before-unseen wonders.
Life is good. Thank you, MS?
So, why not. Gratitude and joy are definitely worth living...
MS or not.
Sunday, April 9, 2017
As the saying goes...
Things stay the same, things keep changing.
Someone sent me something about the Absolute Latest Wonderful MS treatment. Works, does it? Well, depends on who you ask. And what you ask them.
Makes one long for the simplicity of the plumbus,
I'n pretty much running on empty, energetically. In the last week or so, I have sent my wife off to a local Japanese meditation garden, here in Pasadena even! Last night, she was off to see Stupid Fucking Bird... quite the show, I hear. Sending her off to have this kinda fun is one of my greatest joys! No, send OFF isn't the fun part... it's the joy she feels and absolutely radiates that is my source of joy. Which, by the way, I can feel her radiating from across town.
There's not a lot of fun here on the MS Highway, but radiant joy is good for everyone. Everyone.
So, there's your prescription for today. Find joy, share joy. Doesn't matter how or why.
As the saying goes...
Just do it!
Someone sent me something about the Absolute Latest Wonderful MS treatment. Works, does it? Well, depends on who you ask. And what you ask them.
Makes one long for the simplicity of the plumbus,
I'n pretty much running on empty, energetically. In the last week or so, I have sent my wife off to a local Japanese meditation garden, here in Pasadena even! Last night, she was off to see Stupid Fucking Bird... quite the show, I hear. Sending her off to have this kinda fun is one of my greatest joys! No, send OFF isn't the fun part... it's the joy she feels and absolutely radiates that is my source of joy. Which, by the way, I can feel her radiating from across town.
There's not a lot of fun here on the MS Highway, but radiant joy is good for everyone. Everyone.
So, there's your prescription for today. Find joy, share joy. Doesn't matter how or why.
As the saying goes...
Just do it!
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