Some things about the MS Lifestyle are easy. To work or even live with, that is. Some things just keep getting harder.
Hunger, for example. I don't feel it. Haven't for years.
When presented with "maybe I should eat something," I generally don't want to. Even thinking about food, sometimes, is all it takes to get me off it. Sometimes, with medicinal-herbal assistance, I can quit forswearing eating, on rare occasions even looking forward to it. But those are daily rarer occasions.
This has got to stick in a caregiver's craw, as it were...interesting choice of terminology. Anyway, when asking the Sick One, the Caregiver asks, "What do you want for dinner?"
"Nothing" is usually the simplest answer. Well, that road feeds incipient starvation, so that's a poor choice. What else can be done?
"Nothing," comes the answer. This doesn't turn out well for anyone.
Is there a solution? Something we haven't tried yet?
God only knows, and perhaps, but that's about as far as I can go right now.
Well, that's a start.
Maybe...
Tuesday, January 27, 2015
Friday, January 16, 2015
Howl
I'm seeing my reactions to disability differing from moment to moment; sometimes hugely.
It has been at least a decade since playing the organ ... departed, shall we say. That was too huge and I couldn't process it, but I think I have finally just let it go. Every once and a while, I come against "Opportunity to play unbelievable instrument! Can't play it! Oh well." No cries, no struggles.
Some things, though, still make me gasp, even to cry out. If my legs get knotted up as I'm trying to do something which always used to be simple and trivial, I wig out. Like trying to put my feet under the bedclothes.
It's interesting that the organ, which was near and dear to my heart since I was aware of its existence, being a "can't" doesn't make me howl, but moving my legs, which I've been doing for only a couple more years, makes me howl when it drops into the "can't" zone.
An interesting gift, this MS experience shares... the consciousness of what is really, really, precious... because you don't howl over the loss of something that isn't precious. You may weep, but you may not howl.
A most interesting gift, it is...
To howl.
It has been at least a decade since playing the organ ... departed, shall we say. That was too huge and I couldn't process it, but I think I have finally just let it go. Every once and a while, I come against "Opportunity to play unbelievable instrument! Can't play it! Oh well." No cries, no struggles.
Some things, though, still make me gasp, even to cry out. If my legs get knotted up as I'm trying to do something which always used to be simple and trivial, I wig out. Like trying to put my feet under the bedclothes.
It's interesting that the organ, which was near and dear to my heart since I was aware of its existence, being a "can't" doesn't make me howl, but moving my legs, which I've been doing for only a couple more years, makes me howl when it drops into the "can't" zone.
An interesting gift, this MS experience shares... the consciousness of what is really, really, precious... because you don't howl over the loss of something that isn't precious. You may weep, but you may not howl.
A most interesting gift, it is...
To howl.
Thursday, January 15, 2015
Where it all begins
Today's weather is taking me back to my years in Connecticut, in New Haven and Yale University.
One of the only times I took a sojourn for the holidays back here in Los Angeles, I remember taking a flight back... when we left LA, the temperature was 80, and when we landed, it was 8.
I also remember the amazing temperature truths about snow...
Snow can only fall as snow between 28 and 32F. Warmer, and it's slush or rain, and colder, it's ice.
Which means that we used to live for the days it warmed up enough to snow.
Another gift of MS, and one of the oddest... my progressive went wicked progressive here in Pasadena, in southern California. I'm pretty cold sensitive nowadays, but dealing with "it's down to 50 something" is a hell of a lot easier to deal with then "it's down to minus something." Which it too often was, back in the day back there.
And that being wheelchair-bound happened here, not there; a lot of the new construction has been to make things actually ADA compliant, but given the madness of stairs there... By some counts, that library you see in photo above, in the background on the right, has something like sixteen floors.
I have personally walked up ten of them, back in the 70's.
Yale is much like Hogwart's... The stairways do move, but over the course of years, not hours.
One of the only times I took a sojourn for the holidays back here in Los Angeles, I remember taking a flight back... when we left LA, the temperature was 80, and when we landed, it was 8.
I also remember the amazing temperature truths about snow...
Which means that we used to live for the days it warmed up enough to snow.
Another gift of MS, and one of the oddest... my progressive went wicked progressive here in Pasadena, in southern California. I'm pretty cold sensitive nowadays, but dealing with "it's down to 50 something" is a hell of a lot easier to deal with then "it's down to minus something." Which it too often was, back in the day back there.
And that being wheelchair-bound happened here, not there; a lot of the new construction has been to make things actually ADA compliant, but given the madness of stairs there... By some counts, that library you see in photo above, in the background on the right, has something like sixteen floors.
I have personally walked up ten of them, back in the 70's.
Yale is much like Hogwart's... The stairways do move, but over the course of years, not hours.
But it's an interesting life to live, nowadays... Some days, even here in Pasadena, the cold is bitter, or it's profound, or it's invigorating, or maybe even just cold. Ranges between crippling and "well, it is cold, isn't it?"
Certainly brings one back to what a friend of mine said he learned at the Zen center...
Pay attention.
What else is there to do? This is where everything else begins...
Wednesday, January 14, 2015
A place to start
Some interesting stuff came over the wire, speaking about a new site IConquerMS.org, which seems to include stuff you don't hear often from the MS Medical cloud, which seems to fixate on human-disconnected lab stuff, but this time is actually asking patients about their human experience.
This, I can certainly get behind. The conundrum for me is that I hang with/get nearly all of my medical care from, people who live in the Oriental rather than Occidental Medicine world, in the qualitative rather than quantitative world.
The problem I have with "I conquer MS" is that MS doesn't exist. It's not an entity that anyone or anything can "conquer..." Certainly from the Oriental Medicine POV, MS is just the name you Westerners have given your symptoms. Places like India, in which MS onsets are extremely rare, casually report that they treat MS all the time with diet and yoga, no problems. And, compared to the Interferon Madness that a lot of Western MS treatment plans involve (God help us, Tysabri), zero side effects.
I suspect that Western World doesn't tend to follow such paths because (a) such paths tend to be qualitative not crunch-the-numbers quantitative, and (b) you can't turn yoga into a cash cow, like the latest MS drug du jour tends to try to do. It's oral! $100 per pill! At least once a day! For the rest of your life! But it's oral!
I don't follow that road. If you choose to, go with God.
For my path, what needs conquering is myself. Especially my ego, which is too often in my way, far more intensely than just being stuck in a wheelchair.
So there's a challenge for you. As Ram Dass says, "Be here now."
Those three little words encapsulate a real challenge.... Something at which too many of us, such as myself, have become practiced at not doing.
So... I conquer ego.
That's a good enough, and hard enough, place to start.
This, I can certainly get behind. The conundrum for me is that I hang with/get nearly all of my medical care from, people who live in the Oriental rather than Occidental Medicine world, in the qualitative rather than quantitative world.
The problem I have with "I conquer MS" is that MS doesn't exist. It's not an entity that anyone or anything can "conquer..." Certainly from the Oriental Medicine POV, MS is just the name you Westerners have given your symptoms. Places like India, in which MS onsets are extremely rare, casually report that they treat MS all the time with diet and yoga, no problems. And, compared to the Interferon Madness that a lot of Western MS treatment plans involve (God help us, Tysabri), zero side effects.
I suspect that Western World doesn't tend to follow such paths because (a) such paths tend to be qualitative not crunch-the-numbers quantitative, and (b) you can't turn yoga into a cash cow, like the latest MS drug du jour tends to try to do. It's oral! $100 per pill! At least once a day! For the rest of your life! But it's oral!
I don't follow that road. If you choose to, go with God.
For my path, what needs conquering is myself. Especially my ego, which is too often in my way, far more intensely than just being stuck in a wheelchair.
So there's a challenge for you. As Ram Dass says, "Be here now."
So... I conquer ego.
That's a good enough, and hard enough, place to start.
Tuesday, January 13, 2015
Good advice
Quite the weekend.
I went with my wife to this Very Fancy Resort (details aren't important to this particular story) where she was going to attend a Fancy Something-or-other which, as far as I could tell (being as I wasn't part of it, I'm just going on hearsay here) turned out to be amazingly wonderful for said attendees. I'm very happy my wife could participate, and we both are psyched for her to do it again!
As for me... it was a world of "Handicap friendly? Oh, really...."
A roll-in shower! Wheelchair person rolls in, transfers to a bench, and shower away! Except... not. From said bench, the valve that activates & adjusts temperature of the shower was over six feet away. Sure I can roll in, but I can't use it.
Bathroom sinks that are wheelchair friendly, so you can roll up and wash your hands or brush your teeth or whatever you like! How nice! Except... the sink plumbing occludes the path of your knees. Wheel yourself under the sink and smack your knees hard. At which point, you're now in pain and blocked so you can't use the sink that hurt you.
The wheelchair-accessible desk, that is too low to allow a wheelchair to slide under. Calling something "wheelchair accessible" because you can wheel up to it but not use it doesn't count.
Lovely grounds! But all the paths are intentionally bumpy--big bumps, oh that tile looks ever so nice, doesn't it? Until you try to wheel yourself over it. Lots of stairs, lots of big bumps but no rails.
I could go on... but as many nice things there were to look at, they were often impossible for Guy in a Wheelchair to use.
I don't think I took effect from it, parts of it I did enjoy! But as long as I'm in this chair in the state I am last weekend and/or today...
As Finn the Human said quite often in Adventure Time, "I'm not coming back."
And the challenge now is... no grudges. Don't judge. What happened happened, and it's over. Today is today.
Be here now, as Ram Dass has reminded us for years.
Good advice, MS or not.
I went with my wife to this Very Fancy Resort (details aren't important to this particular story) where she was going to attend a Fancy Something-or-other which, as far as I could tell (being as I wasn't part of it, I'm just going on hearsay here) turned out to be amazingly wonderful for said attendees. I'm very happy my wife could participate, and we both are psyched for her to do it again!
As for me... it was a world of "Handicap friendly? Oh, really...."
A roll-in shower! Wheelchair person rolls in, transfers to a bench, and shower away! Except... not. From said bench, the valve that activates & adjusts temperature of the shower was over six feet away. Sure I can roll in, but I can't use it.
Bathroom sinks that are wheelchair friendly, so you can roll up and wash your hands or brush your teeth or whatever you like! How nice! Except... the sink plumbing occludes the path of your knees. Wheel yourself under the sink and smack your knees hard. At which point, you're now in pain and blocked so you can't use the sink that hurt you.
The wheelchair-accessible desk, that is too low to allow a wheelchair to slide under. Calling something "wheelchair accessible" because you can wheel up to it but not use it doesn't count.
Lovely grounds! But all the paths are intentionally bumpy--big bumps, oh that tile looks ever so nice, doesn't it? Until you try to wheel yourself over it. Lots of stairs, lots of big bumps but no rails.
I could go on... but as many nice things there were to look at, they were often impossible for Guy in a Wheelchair to use.
I don't think I took effect from it, parts of it I did enjoy! But as long as I'm in this chair in the state I am last weekend and/or today...
As Finn the Human said quite often in Adventure Time, "I'm not coming back."
Be here now, as Ram Dass has reminded us for years.
Good advice, MS or not.
Sunday, January 4, 2015
Maybe even
Man... I had all these Great Ideas about stuff to share, and I made myself a sandwich! And enjoyed it!
And suddenly... I have hit the wall. More like "the wall hit me."
It was a very good idea for me to stay home from Kotohajime, an event held yearly in Los Angeles's "Little Tokyo," It has always been a day of Holy Obligation for my wife and me, but when I got off the bed into the wheelchair for the first time this morning, I knew that I wasn't going, and the way I feel now just says to me... Good choice.
My wife is going for us. It is always a very magical show.
Paid some bills, connected my phone to an iMachine so it could charge & stuff. Gotta have myself some medicinal herb, yum yum (also gotta remember to have the last of the Pop-tart after the yummy yummy herbs... Not before, yuck). After concluding the Afternoon Herbage, pick up my iPhone and go to bed. Listen to some favorite cartoons, maybe... Ones that make me smile. And if I'm lucky, maybe even...
Laugh
And suddenly... I have hit the wall. More like "the wall hit me."
It was a very good idea for me to stay home from Kotohajime, an event held yearly in Los Angeles's "Little Tokyo," It has always been a day of Holy Obligation for my wife and me, but when I got off the bed into the wheelchair for the first time this morning, I knew that I wasn't going, and the way I feel now just says to me... Good choice.
My wife is going for us. It is always a very magical show.
Laugh
Friday, January 2, 2015
Just sit
Quite the adventure, yesterday.
Caregiver Wife was taking her mom to the airport for Mom's flight home; I was alone in the house. All was well.
I accomplished House Things. I vacuumed the carpet in the bedroom (which involved quite an adventure merely getting the device into the bedroom; something on wheels trying to push something with wheels is... interesting. Physics 101 given substance.) I laundered some clothes. I made myself quite a yummy BBQ-chicken lunch, with the leftover chicken, Home Ec 101 and such. Did some e-work, like a nicely important e-mail (to someone I care about, not a business thing).
Somewhere around 3:30, I was trying to transfer from the commode back to the wheelchair, and my legs just quit working, and I wasn't quite able to fall all the way back into the wheelchair so I landed my butt just on the edge of the chair, but not enough to let me get a good grip on the arms and reseat myself better. This kinda thing seems to happen between 2:30 and 5:30; I come to a neural/energetic nadir and when that happens, it's really, really for the better to just lie there and wait until it's over.
Well, I couldn't get my feet under my weight, I couldn't flip over and get on my knees and even attempt to pull myself up, I couldn't... anything.
And here's the interesting part... no emotion, no strife, no negativity, no nothing besides "Well, so that's what we got... now what do we do?"
As it turns out, we call the neighbor, who expects this sort of desperation call, and it takes us both a while to figure out how we can do this and he basically has to deadliest me off the floor and into the chair. He stayed nearby until I could transfer back to the bed, but I made it. and stayed there for at least a couple more hours until Wife came home.
But I took no "punch in the emotional gut" effect from it. It was just simple stuff... Let's get to a more comfortable place. Can I do that? ... No ... what about that? ... No... This goes on for several minutes, and then I call the neighbor, because that's all that's left.
He says he'll be right over. Which takes a while. I just sit on the floor. No fussing, no fuming, no worrying, just finding a comfortable position in which to lean against the wall and then enjoying it.
A very Zen moment. One of the first teachings of the Zen method...
When you sit, just sit.
Caregiver Wife was taking her mom to the airport for Mom's flight home; I was alone in the house. All was well.
I accomplished House Things. I vacuumed the carpet in the bedroom (which involved quite an adventure merely getting the device into the bedroom; something on wheels trying to push something with wheels is... interesting. Physics 101 given substance.) I laundered some clothes. I made myself quite a yummy BBQ-chicken lunch, with the leftover chicken, Home Ec 101 and such. Did some e-work, like a nicely important e-mail (to someone I care about, not a business thing).
Somewhere around 3:30, I was trying to transfer from the commode back to the wheelchair, and my legs just quit working, and I wasn't quite able to fall all the way back into the wheelchair so I landed my butt just on the edge of the chair, but not enough to let me get a good grip on the arms and reseat myself better. This kinda thing seems to happen between 2:30 and 5:30; I come to a neural/energetic nadir and when that happens, it's really, really for the better to just lie there and wait until it's over.
Well, I couldn't get my feet under my weight, I couldn't flip over and get on my knees and even attempt to pull myself up, I couldn't... anything.
And here's the interesting part... no emotion, no strife, no negativity, no nothing besides "Well, so that's what we got... now what do we do?"
As it turns out, we call the neighbor, who expects this sort of desperation call, and it takes us both a while to figure out how we can do this and he basically has to deadliest me off the floor and into the chair. He stayed nearby until I could transfer back to the bed, but I made it. and stayed there for at least a couple more hours until Wife came home.
But I took no "punch in the emotional gut" effect from it. It was just simple stuff... Let's get to a more comfortable place. Can I do that? ... No ... what about that? ... No... This goes on for several minutes, and then I call the neighbor, because that's all that's left.
He says he'll be right over. Which takes a while. I just sit on the floor. No fussing, no fuming, no worrying, just finding a comfortable position in which to lean against the wall and then enjoying it.
A very Zen moment. One of the first teachings of the Zen method...
When you sit, just sit.
Thursday, January 1, 2015
Just this once
MS-related New Year's resolutions...
Eat. Keep eating. "Eat more often" trumps "try to eat more at official mealtimes." Just having snacked at all keeps me in a better place.
Do whatever it takes to get myself into a "happy to eat at least something" place. I've been spending a horrible amount of time in a loop of I don't want to eat anything -> I don't eat anything -> I get weaker, and an even lower appetite, if you can call it that at all... I can use some herbal aids to assist, sometimes, but so far at least, just keeping "the tank" away from absolute emptiness makes eating at all more possible.
Pick things that are not only "within my physical world" but "to do's" that are, by me, doable. Do them. As well as you can, of course, but doing something is a win enough.
Know when it's time to stop before you hit the wall. Stop long before there's even a chance that it's gonna take you to the wall.
Speaking of hitting the wall, I just did, so I'll end with one final resolution: relearn my reaction to dropping things. As a theater tech, every time anyone dropped anything, my immediate reaction was "You can put that right there." So, I need a new "catch phrase" -- or is that "drop phrase?"
I survived New Year's Eve and Day with quite reasonable aplomb.
Since we live along the B2 flyover path as it approaches the Rose Parade route, we get a really cool microscopic air show. (We get a preview a few days in advance when the pilots fly the route with "only" F-15s.) I couldn't deal with facing the cold, but my wife popped off to snap a cool picture:
And so, thus do we resolve... or at least, we try to be resolute. Just this once...
Eat. Keep eating. "Eat more often" trumps "try to eat more at official mealtimes." Just having snacked at all keeps me in a better place.
Do whatever it takes to get myself into a "happy to eat at least something" place. I've been spending a horrible amount of time in a loop of I don't want to eat anything -> I don't eat anything -> I get weaker, and an even lower appetite, if you can call it that at all... I can use some herbal aids to assist, sometimes, but so far at least, just keeping "the tank" away from absolute emptiness makes eating at all more possible.
Pick things that are not only "within my physical world" but "to do's" that are, by me, doable. Do them. As well as you can, of course, but doing something is a win enough.
Know when it's time to stop before you hit the wall. Stop long before there's even a chance that it's gonna take you to the wall.
Speaking of hitting the wall, I just did, so I'll end with one final resolution: relearn my reaction to dropping things. As a theater tech, every time anyone dropped anything, my immediate reaction was "You can put that right there." So, I need a new "catch phrase" -- or is that "drop phrase?"
I survived New Year's Eve and Day with quite reasonable aplomb.
Since we live along the B2 flyover path as it approaches the Rose Parade route, we get a really cool microscopic air show. (We get a preview a few days in advance when the pilots fly the route with "only" F-15s.) I couldn't deal with facing the cold, but my wife popped off to snap a cool picture:
And so, thus do we resolve... or at least, we try to be resolute. Just this once...
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