Good News!
This is the second publication of the MS Musers (also available as an old fashioned, hand held paper chap book). The first was a book that included over a hundred pieces written in our twice weekly writing groups. Our intention was not to publish but when we looked at the stories we told each other, we decided that they could be of benefit to others with Multiple Sclerosis, or have someone they love who has it. It was so well received that we began collecting works for a second Musings collection.
This chap book is a sample of some of our most recent works. We have decided to compile a second edition. Printing costs are considerable so preorders are helpful to us and it would guarantee that you get your own, autographed copy. We would also welcome any donations, which would be used to defray printing costs. If you would like to preorder one for yourself (or others) please contact John Crandall at 916-708-9708 or john@fireartsofsacramento.com. –john
This is the blog version of the Chap book
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Crazy-Making
MS is always on my mind. I don’t want it there, but it is. Everything I do begins with questions of can I, or how do I, or will I be able to. Pipe dreams of travel are always quashed with the reality of not anymore. Good thing I did that when I could, before MS.
Sometimes I feel like I am wearing it all the time. That bright orange shirt that says MS and walk. Strangers see the fat old lady waddling along with a walker and think if only she’d lose that weight; they don’t know about the tiny little women who struggle more than me with this disease. What do I care when strangers or even the people I know and love judge my abilities or lack thereof, I never used to.
It’s CRAZY-MAKING this MS. Having to plan each step, especially now that I am walking more than rolling. Planning each task, big or small for every day. For someone forced to grow up too fast, was put in charge of siblings before her teens, and eventually taking on grownup obligations before I was mature enough to understand it all being in charge became part of my life, in school, at work, with my own family. Doing it all and organizing on a minute’s notice became second nature, easy and mostly successful.
But now MS has taken over. No more spontaneity. Things can still be done but now there must be prior notice and careful planning. How close can we park? Are there stairs? Where are the restrooms? Can he drive or do we need to give the two day notice to Paratransit? Walker or Scooter? Travel can still be done but questions have to be asked and answered. One of my important questions when staying in hotel is not about the accessible bathroom, which is nice, but for me how high is the bed? Will I be able to get up and down from it without a stool, because the nights of not getting up at least once are a thing of the past.
CRAZY-MAKING I tell you! And now that I have put this down for posterity, I need a nap. —
Irene Bean
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“Welllllll!”
I’m sitting in the waiting room and a man who was a nurse asked, “Who is your caregiver?”
And I said, “My mom, and dad, and myself.”
And he said, “OK, OK. Well right before I disappear I only have one more thing to say to you. ‘Only good news today.’ and how come because there will be no more pain for you anymore.”
And I asked, “How is that possible, are you going to overdose me with Vicodin or something?”
He said, “No, oh no. I’m Jesus and now you’re cured.”
I said, “Oh wow. Thank you. Thank you so much, but wait, am I dead?”
And Jesus said, “Welllllll!”
David Ruiz
Write Before I Disappear
Only Good News Today
Who Is Your Caregiver?
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Untitled
She sat in a resigned silence. What she didn’t say was, “you’re not talking to me, you never talk to me, I’m only here because I love you.”
What he didn’t say was, “I know. I don’t know how to talk to you. It used to be so easy so it shouldn’t be this hard.”
He stood up, went to the sideboard and refilled his scotch. Returning to his place on the couch he had to pass right by her and caught a faint smell of her perfume. A flood of happy memories resided in that smell, they caught him by surprise and he nearly lost his balance.
This was not a new conversation. It consisted almost wholly of recycled material, material that lived in the compost pile of unresolved issues that they had spent years carefully cultivating and could now hurl at one another with the accuracy of a major league pitcher. But they had reached a new level, a level where they barely had to use the words to hurt one another, and now is just right now, time to move past years of missed opportunities. So instead of returning to his seat, he went and squatted by her chair and rested his hand on her knee.
What he didn’t say was, “I have to use other means to tell you how much I love you, and this is one. I really do love you.”
And what she didn’t say was, “I know, some things go without saying,” as she clasped the hand on her knee.
John Isham
11/2/13
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Quirky Detail
My physical therapy candidates,
Will come to my home to assess,
How my physical environment rates,
With my disabilities mess.
While they’re there I’ll decide,
What details of my life to reveal,
Setting the most quirky aside,
In favor of those on a more even keel.
Though there is some lore,
About some practices I use,
Like pissing in a drawer,
From that I will myself recuse
. Len
February 22, 2014
Prompts: Quirky Detail,
The Red Zone, That’s A Sign
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Spontaneity?
Adaptation #12: When I was a younger man in good health and full of piss that smelled like vinegar I could squeeze almost anything into an already long list of things to do. During my school days at the University cramming for finals and writing thoughtful term papers always took place during Christmas break. But that never got in the way of being a big fan of the holidays. My brothers would point at me and say, “He’s an avid artist of Christmas present wrapping.”; or “He makes any old Christmas tree look fabulous.”, and “You ought to see what he did to decorate the front yard.” All of this was true, but they were all squeeze ins. I would return to campus after the holidays and get straight As on the finals as well as A+s on the term papers … all of this while working a split shift 40 hour a week job. It was great for staying thin and svelte. “Aren’t you hungry?” my roommate would say. My reply, “Let’s be serious; who has time to eat? I have things to do.”
Today is very different as a result of making necessary adaptations to accommodate m.s. Long stretches of open time for getting something done are scarce. For example, the ramp on my ramp van rattles making the vehicle sound like an old heap when I’m driving down the road. So in November I put it on my list of things to do that hardly ever get done. #14 – call the dealer. It’s now mid-January and I called the dealer who said, “Stop by when you’re in the neighborhood and we’ll have a look at it. Call first.”
I’m thinking, “Whoa … that sounds like spontaneity … ‘when you’re in the neighborhood.’” I pull out the calendar and glance over the next 60 days; Tuesdays and Thursdays are best because Mondays, Wednesdays, and Fridays are either housekeeper, writing, or lunch-with-friends days and there’s never time for more than one event in my ms days – no squeeze ins. Then in my mind I start filling in the unwritten parts of my Tuesdays and Thursdays for a “stop by” at the dealer’s. I visualize things like a ten hour stretch of sleep at night, three hours of P.T., catheterization, and getting dressed in the a.m., a 2:00 p.m. nap, spending time with my father, arranging my meds, going online to do banking, news, and e-mails, and ordering supplies that keep my meds and hygiene up to date, and I spot a squeeze in on March 10 for a “drop by” at the dealership. And I find myself marveling at how inflexible I’ve become. There is no spontaneity anymore. No more squeeze ins. This, I conclude, is about an adaptation to ms which I really hadn’t noticed until now.
Len Silvey
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“Mission Statement”
The Mission Statement for my life has changed with the passing of time. Although the common core question has always been, how do I get there from here? What is the best way to reach whatever goal I have set, or that life at the time, sets for me?
Cardinal rules that never change are, care about others, try not to criticize or laugh at those not as enlightened as yourself, have fun and share joy, always learn new things. New ways of doing things has become most important as the years roll by.
How old are we, becomes how old we are as life progresses. Years laid out in chronological order don’t always relate to maturity or ability to function. Sometimes a thirty year old is older than “Lizard’s spit”, while an eighty year old can be friskier than “a rooster in a hen house on a Saturday night”.
I suppose having that Mission Statement is a good check to have whenever you lose sight of what life can bring. When you feel like you are picked on, left behind, not chosen, not appreciated. Or when you feel like you haven’t done all you should, all you could.
Checking back on that Mission Statement might just show you how to get back there from here. Irene Bean March 2015 Prompts: How old are we? How do you get there from here? Mission Statement, Lizard’s spit.
Crandall Writers 