Except for David The Thug
Musings of MS Minds 3rd Edition - March, 2016 Contributers Harold Bean Irene Bean Len Silvey David Ruiz John Isham
Edited By John Crandall
Marise Rinkel Bert Rinkel Maureen McGee Rotondo Loreen Hammett Annette Morehouse
John Introduction: As the cover says, this is the third edition of ButYou Look So Good: Musings OfMS (Multiple Sclerosis) Minds. The first edition was a 1 32page book and the second and third (this one) are chapbooks. They all are, or will be available, at http://www.crandallwriters.com/ms-musings.html. The title, Musings Of MS Minds loosely defines what these writings are comprised of. It also flavors the writing of the groups that meet at least twice weekly. Members either drive from the local area or telecommute and join us over the Internet. This group is an outgrowth of and maintains the practices Pat Schneider describes in her book, Writing Alone And With Other. It also reflects the work by James Pennebaker, in his 1 990 book, Opening Up, and in his other works. In his research he explores how expressing emotions through writing affects the immune system. Another work that informs the process, for me, is that of Marshall Rosenberg's efforts in teaching Nonviolent Communication. Writers in this group either have Multiple Sclerosis or are impacted by it. The writing, generated in these groups is usually general; there are no rules about what can be written or how, just that each participant will write. No one has to read their work though most do, and we follow Pat Schneider's lead by responding to each piece as if it is fiction (difficult but significant). We keep our responses to what is strong (for us), what we like and what will stay with us. There is no requirement that MS be a topic or even a central part of the writing, but it usually has an influence.
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Continued At first the MS groups, were just one more venue where I could facilitate the process of writing as a way of healing. Now, these writers are more than that to me now, they are part of my Village, they are a part of who I am. We often struggle with how to tell others what this method brings to us, knowing that any descriptions will fall short. The value of these groups is something that I find difficult to express in words; it must be experienced to be understood. Usually, once a person sees the value, they become regular participants. In some of my groups, there are people I have written with for more than ten years - nearly every week. The pieces that are to follow were not written with the intent that they would be shared beyond the intimate confines of the group. These are the personal thoughts and reflections of the writers with a minimum of editing. They are offered to provide a perspective on the ways that MS affects individuals and their families. They are also put forward as a way to show the power of"Writing As Healing" methods in the hope that others will be motivated to experience it for themselves. As you read these pages, please remember the privilege you have been given by the authors in being allowed to share as I have, in these, their stories. -john
David Prompts:
She Was A Late Starter ItWas Heavy News Flash’ “Well hello. NEWS FLASH: You have multiple sclerosis, and by the way it is contagious!” That’s how it felt to get the diagnosis for the first time. We know it’s not contagious. I’m sorry. But ms makes our memory and our comprehension like doo doo. I’ll admit “it was heavy” in the beginning, just like anything else. By the way “she was a late starter” as well; it took forever to get the diagnosis right. I call my ms a “she” because she’s my ms bitch. She is so selfish, it’s always about her. No, you can’t do anything anymore. So just curl yourself into a ball and just let life pass you by. Why would you want to try to walk again, or ride a bike, or drive a car or clean yourself up, or why would you want to give a damn about yourself anymore? But wait a minute, and bang - a light bulb moment: because we choose to, damn it. I believe in that idea, “What doesn’t kill you makes you stronger.” I truly believe that people (us) are stronger than we think we are, and I am proud to be one of the many who believe that. For me and for others the multiple sclerosis diagnosis was a wake up call. It was time to clean up our act; it was time for us to love ourselves for the very first time. It was either that or fall off the face of the earth. We have gotten so much in return and I am so thankful and so blessed. What makes us feel really good about that is that we really know it. I have to pat myself on the back all the time, everyday and to never ever forget it. And do you know who will never let me forget it? My Savior, my miracle, my Lord, Jesus Christ. So Thank You Jesus for blessing me. AMEN : )!!!
David Prompts:
Sorry WhatYou Notice Victory Is The Next One Let’s go back - back in time if you will, when the doctor said, “I’m so sorry, but you have multiple sclerosis.” My response was, “What is that exactly?” “It’s a neurological disease. It attacks your myelin in your body - also known as the nerves that run from your brain to your body.” “Ok, o.k.” I say, holding my head like I understand what the hell the doctor is talking about. So the doc asks, “When did you notice what you notice telling you something was wrong, even though you probably didn’t know something was wrong?” “Well, let me really think about that. Just give me 7 minutes and I’ll remember, o.k. Oh year, it was when I was running, doing the P.R.T. when I was in the Navy. I got drop foot in my right leg (well my right foot) but I didn’t think it was a big deal. I just ignored it because it went away. But then everything just got worse after that. I couldn’t walk long distances, my balance was kinda shaky, and, oh yeah, that other minor thing.” The doc asked, “What other minor thing?” I said, “Oh, that I wanted to kill myself, you know, that whole chestnut. But I found Jesus, so “Victory” was in my favor. AMEN and THANK YOU JESUS. : )!!!
David
David Prompts
Prompts:
He said, “ This is ‘your year to become’ even better and to keep getting better and better.”
“Wait,” I asked, “what do you mean ‘all that has changed this season’?. What does that actually mean?”
I said, “I know and that’s what we’re going to do, and we’ll keep doing it until we can’t anymore.”
He says, “Everything will get better and better as your life goes on, but you’ll have to go through your own personal hell first. When you finally get through all of that, you will know and you will see.”
I Began To Cry What I MissedWas YourYearTo Become
That’s always been the New Year’s resolution ever since this whole thing with multiple sclerosis began. It’s our way of living anyway, oh and to still look good. That’s the motto now. Now, when I see and hear about going out late, going to clubs, and dancing and having a ball, a really good time, “I begin to cry” because I remember doing all of that back when I was technically healthier. Now with ms ‘what I missed is’ being a young man with my whole life ahead of me … being whole, really good, and with dreams especially a hard worker. I loved that. But I’m not upset about this new life I have now. I am forever grateful. I mean I’m still a hard worker, just in a new different way. So thank you Jesus, but damn you for these good looks of mine. AMEN : )!!!
All That Has ChangedThis Season You KnowThe One ButWhat Do You ReallyWant?
“Wait.” I said, “Who are you? Who are you talking to?” “You know - The One. Jesus Christ, the lord.” “Wait.” then I asked, “How come we have to get to our lowest point in our lives to find you? You know, wanting to commit suicide, being depressed, not caring about our own life anymore.” “WHY?” I asked. He has this glow and small grin on his face and says, “Well o.k., ‘but What do you really want?’” And I said, “No, no, don’t try to avoid the question!” ……… and he snaps his fingers and then……….
David Prompts:
The Way My House UsedTo Be We Crawled Out OfOur Own Horrible Pit Of Despair EveryTime I See Her She Asks Me My Name When finally taking a new direction in life, it wasn't ‘the way my house used to be’, meaning my house (also known as our life) changed dramatically. ‘We crawled out of our own horrible pit of despair’ so to speak. We saw the light. We called it being born again. We had to learn everything again - like a baby taking it’s first step. That was us: what to wear, going to the toilet making it on time, learning how to drive again. We were doing all of this, just in a different way. The best way. Without hurting ourselves or others. We were trying to remember some things- scratch that - We were trying to remember everything. It was exhausting. What a battle that was. We needed and asked for a lot of help. Well, in the beginning of course, but just like anything else, you improvise, adapt, and overcome. We got a hell of a lot better and we are very proud of it. We seriously know we’ve been blessed, and that we must not to take anything or anyone for granted (except IRENE - just joking). I’m just looking out for my brother HAROLD. It’s important to just realize and recognize all the beautiful and good hearted people in our lives, and be forever grateful. We have to remind ourselves every day. It’s all a part of our daily routine, because if we’re late on something or something changes that means we have to change our daily routine, even thought it’s changed the routine, it still gets done just in a different way and time but it still all gets done.
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Continued And speaking of good people, let’s talk about JAN. She has serious memory problems. ’Every time I see her she asks me my name’, but I don’t mind, because to me, personally, she is and always will be Mrs. Frank Sinatra. We are so blessed just to know her.
So thank you Jesus and please, please, how about some World Peace. AMEN : ) !!!
Len There are a dozen or more adaptations I have had to make as my ms has progressed. A dozen or more means way more but I have not stopped to count. I just know it’s a lot more than 1 3 things I have to do different but I’m not sure it’s two dozen things. The problem is the adaptations have become so much a part of my life that I stop thinking of them as adaptations until I stop to think about them or until somebody else gets in my way not knowing or perceiving the adaptations I have to make. Adaptation #2 Here’s another one - Closing a door behind me when I’m leaving home, or anyplace else for that matter. It takes some pretty careless and aggressive behavior. It’s actually the reason I never got another dog after Thatcher died. It’s all I can do to get me out of the house let alone my dog - without crushing her dead in the door jamb or under the wheels of my 300 pound scooter … splat. The solution is a handicap door opener/closer - hit the big button, get out of the way, the door opens, you exit, on a predetermined delay (say 20 seconds) the door swings closed behind you, and your on your way. Adaptation #3 When my brother died of ms he left a clock that flashes the time up to the ceiling so when I wake up in the middle of the night I can tell what time it is without having to prop myself up on one elbow - which - duh - isn’t happening anymore after all, I have ms. Trouble is the darned clock is GPS and it’s programmed only for Mountain Time instead of PST, so it’s one hour off six months out of the year. So between April and October each year I wake up, look at the ceiling and think,
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Continued “today I have to alter time by 1 hour.” If I don’t, I’ll be an hour late to everything for the rest of the day. Adaptation #5 Traveling with my mobility devices has made for major adaptation in the hopes and dreams of my life. The ramp van concept goes for volume inside to handle the mobility device and in addition to allow for whirl around space on the smooth metal floor. What you wind up with is the clinical feel of a hospital room on wheels and living with the constant anxiety of getting trapped inside if there’s a dead battery or trapped outside if someone parks in your ramp space. But even more than that is the realization on awakening one morning that there is no agile “jump and run” sports sedan sitting in your garage. No more quick trip to the store or the drive through. Your sports car days are over Bunky. Adaptation #6 Looking over the table full of gifts my choice was not governed by what’s likely to be inside of this one or that one. A more important criteria was picking one that could fit in one hand so I wouldn’t drop it. This is often a criteria of choice when you have ms. Also, I was looking for one that would require minimal hand dexterity to open it. Narrowing the choice further I looked for one that looked like it might have ms … kind of forlorn, fatigued, depressed, or crippled up. Sure enough there were one or two that looked like they had been on the table several years in a row. When all else fails, I’ll zero in on the one that seems like no one else could possibly want and choose it. I reached for it saying, “I want you!” Adaptation #8 A physical therapist had me stand on a block of hard rubber and told me not to fall down for 30 seconds. Its was quite a dance as the ankles above each foot caved one way then another then
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Continued another as the body swayed with ever increasing unpredictable motion leading to an inevitable loss of balance —- but I made it to 30 seconds. “Alright,” the physical therapist said, “try it with your eyes closed.” What a dance. One thousand and one, one thousand and two … time! With ms do not dance with your eyes closed. Do not dance. Adaptation #1 2: 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. #1 4 - call the dealer. It’s now mid-January and I finally called the ramp/van dealer who said, “Stop by when you’re in the
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Continued 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 lunchwith-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 1 0 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. Adaptation #1 4: The Bathroom Mirror There was a time when I stepped through the door of a hotel or theater men’s room and I could steal a glance of myself in the mirror and pretty much count on a waist up impression of what the rest of my party outside was seeing, make any quick adjustments, and return to the outer sanctum relatively confident in my presentability. Fast forward. Try this. Footsteps follow me down the hall to the men’s room, but they clearly aren’t my footsteps. Mine are rolling wheels, and up to the counter I glide in my wheel chair for a look in the mirror. All I can see through the mirror from my seated position are the frown lines above my eyebrows and the top of my head. A wheel chair view of“How do I look?” Sometimes when the
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mirror is low enough I can get a glance of my elevated elbows spread out in a grasp for stability with my flattened chin and mouth leaning on the countertop only to exaggerate the view of my snoz squared off between two slit eyes. How many times have I caught this glimpse and thought, “Gheesh … is there a back door in this place? Surely this is not the way I look to them out there.” It’s especially bad if my hair is in one of those fly away modes characteristic only of very old men. Reaching for the faucets - I mean really reaching - hands now way above the elbows to get some soap and water on my hands requires a high up reach for paper towels yielding the feeling of water trickling down each arm to wet arm pits.
rails?” or “No joke, do you have grab bars?” If you’re using a walker, or even a manual wheel chair, some kind of accommodation can usually be agreed upon before you’ve gone to the trouble of arriving only to find you really shouldn’t have gone there at all.
A momentary slouch of discouraged depression in my wheel chair reminds me that whatever beauty I have to present to my friends outside must not be coming from my outer appearance. If it is I’m screwed. I remember once not so long ago being honked at from behind only to look in the rear view mirror to see this crazy old man in the car behind me gesticulating and waving at me. “Who the hell is that insane old wierdo, and what does he want?” I thought before realizing it was my best friend from high school 65 years ago. With that realization, the crazy old wierdo suddenly became the endearing and friendly soul mate I’ve always known. Adaptation #1 5 When you have multiple sclerosis and your balance and walking problems have progressed past “early cane” to “late walker” or “early wheel chair”, you find yourself going to people’s houses less and less. You may question, “Why is that?” Here’s the answer. Depending on your stage of progression you’re likely to ask your prospective host, “I don’t mean to seem nosey, but, are there steps into your house?” “How high are they?” “Do you have hand
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If you’re in a power wheel chair, things change a little. Now you’re likely to ask, “Do you have ramps?” If they say no, you’re pretty much explaining, “I don’t think I can roll my scooter into your house without a ramp at the threshold.” “No, no!” they’ll argue, “Rules are meant to be broken; we’ll just lift you and your scooter up the steps to the house.” However well meaning, trust me, lifting me and my 300 pound scooter up the steps is pretty much out of the question not to mention that it’s inelegant. “So, what is the help like?” I ask. “Do you have gorillas there?” Even if they say, “Yes, we have ramps and gorillas.” it becomes a political question. “What kind of floors do you have? The wheels on my scooter have traveled over engine oil, mud, dog shit, and mustard.” “White carpets you say?” “Yes. Over the top of Madagascar soft maple we had installed last week.” Long pause. “Let’s meet at McDonald’s instead.” So when your local assembly member asks you to a “free pancake breakfast” to discuss draught management options at constituent Smith’s house in Cheviot Hills, decline.
Irene
Irene It has been a long time since . . . Except When . . . I am always in charge, except when my brain says “not today” or “not this moment”. It's been long time since I've felt completely in charge, sure of myself enough to make the important or even not so important decisions.
The End
1 . Choose what you want 2. Estate Sell 3. Sell the House The End Irene Bean February 201 6
Joy Take the time today laugh, love, cry, dance, sing, record the joy of your life The joy of your life is today, not yesterday not tomorrow, NOW Now, I laugh and sing The joy overlaps the sadness Tomorrow, I will smile Sing a song of joy Feel your heart through you very soul Share it with the world Irene Bean December 201 5
I know I need to accept this on the days when I call a disconnected phone number for a person not even living anymore. Or those days I comb my teeth instead of brushing my hair. Or stride into a room with great purpose only to wonder why I am there. Or put the water through the coffeepot without adding grounds and wonder why it is so “weak”. Accepting seems like giving in to those who can't accept and adapt. Those who continuously say “yes, but, they don't understand”, “I tried that”, “They never listen” “I don't have the money, or the family, or the friends you have”. I used to have much more compassion and patience, but lately I find it harder and harder to empathize. Maybe it's because I feel that way sometimes too. But then I realize my life, how ever it goes, is my life. I can choose to whine, cry, feel sorry for all that I have lost, all the plans that I didn't get too and now probably never will, and make myself and other around me miserable and find myself alone. Or I can choose to laugh at the foolishness that happens when my brain takes those silly detours, and my daily life is different daily. I can be ready for the changes, learn different ways of doing things, even ask for help and learn to accept it gracefully. Life is different for everyone and not long enough for anyone to give up the chance for joy. So finding that little bit of Joy each day is what I strive for.
Irene
Irene
A Different Kind Of Love Story I know age has made me unattractive, but now all he talks about is how attractive I will be after. Doesn't he remember all the fun times we had speeding along the river roads. Or checking out the Giant Redwoods, driving through the trunk of a tree? What about all the times we headed over the summit to the Lake? How about the time we entered SF over the Bay Bridge just to climb the hills, see the sights and zoom home across the Golden Gate? Doesn't he remember that cross country ride we took together? Today's the day! What is he looking for? Why does he need a pen he has his own pencil, right there in his hand. What are those papers he is signing? A bath now? Why is he doing this, doesn't he love me anymore? He was so happy when we first met, I could feel his excitement and his joy every time we were together. No, don't leave me. He's gone and he's left me with these strangers. After being rubbed all over my body I am taken to a small room all I remember is that smell and the heat it was so hot. Hours later I am taken outside into the cool afternoon, and there he is a giant smile on his face. A man passing gives a low whistle and says "that cherry-red corvette is a beauty, and he just smiles and says I know and she's all mine."
Irene Bean June 2015
Depression Depression is not sadness, not feeling blue, or down. It is like death Cannot move, cannot feel The world moves around quickly. Ignoring me I do not care that I am ignored, or forgotten I am alone here A pill, gentle words, spoken in whispers, but still I can't yet awaken. Today there are no clouds to hide the real colors. Is it over? For now.
Irene Bean December 2015
Irene Prompts:
Action this day. Sensations. A smooth fitting micro-fibered panty. The bill board read SMOOTH FITTING MICROFIBERED PANTY, in bright fluorescent colors. I had to pull over to the side of the road to take in all the sensations it invoked in me. After the laughter subsided, the memories began to overflow. The memories of soft touches, cool bodies warmed by sweat. Of silly young girls happily applying make-up and silky underthings below the dazzling dresses for the prom. The hard hug from my father when he saw me in my wedding gown, his rough hand I couldn't let go of on that special day. The silky feel of the newborn son that was ours. The smell of baby powder still can evoke that feeling of wonder and fear for the sons we brought into this world. The sterile smell, the hum of fluorescent lights, the action all around me that I was the center of, but not part of. Peoples cold hands taking temperatures, feeling for a pulse, the rush of the blood pressure cuff pumping once again, the sickly sweet sound of“how are we today?” or “just going to take a little more blood”. Not a memory I want to dwell on, my mind moves on. The smell of the ocean fresh, crisp, salty. The feeling of that first toe dipping into a wave as it hits the shore, then the drag on the sand that makes you fear it will drag you out and maybe you can't get back. My! I don't think that was the intention of the billboard ad, or maybe it was. The collage of memories, bring back deep personal sensations of touch and smell and sights locked away not to be Continues
Irene
Continued brought up all at once, it has changed the course of this day. I am calling in to work, taking a mental health day. I am going to check into that special place along the river and I 'm calling him to meet me for lunch with or without those fancy panties.
Irene Prompts:
How would you feel? Quick and Easy. Down to earth advice. Okay here is the question. How would you feel….. How would you feel if you were the only one with legs in a world of worms? How would you feel in the center of a crowd of people you could never agree with? How would you fell standing at the top of the mountain looking into crater knowing the volcano might erupt? How would you feel if you had to give up one of your senses and if you didn't decide quickly “they” would? How would you feel standing on the shore watching the sunset and knowing you weren't the only one to experience it's awesome beauty? How would you feel if you knew today is all there is? The quick and easy answer is you'd feel special, chosen to be the one to be put in those implausible situations. But maybe you should take some down to earth advice from someone whose been there if only in my dreams. Enjoy each moment, save the memories for the times when life has nothing else to offer.
Irene Bean June 2015
Marise
I’m only a little walker with three wheels, that’s me What can I do, that would set me free? There, in the dark corner of the garage, I stood, If I just had some purpose, if only I could I wept in sorrow of memories past; My life was over, I wouldn’t last. My wheels were heavy with burdens to bear, Feeling totally useless no happiness to spare. Then the door opened and light gave me hope; My owner came with water and soap She scrubbed my frame and polished my bag, Cleaning me up with a nice soft rag. “Today we go out,” she whispered to me. “Before you turn rusty, we’re going to see If there’s a need for you, near or far. But for now you’ll ride in the trunk of my car.” And so we rode out, through many a street Then we stopped and my lady jumped to her feet. “We’re at the RedCross, and I think they may Have a use for a little walker today.” “Good morning,” she said to the man of the Red Cross,, “I have a good walker that needs a new boss.” “We have wheelchairs, not walkers,” the man replied “But, I’m a good walker,” from the trunk I cried. “However,” the man said, “I know of a need.” If you follow that road, you’ll find her indeed. She’s pushing a wheelchair on her way Determined to buy a walker today.” And so we continued until we saw where A lady was pushing an old wheelchair. Our car stopped, the door slammed, I heard my lady say, “Did you stop at the Red Cross earlier today?” “Yes I did,” came the reply with surprise.
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Contiued “I’m looking for a walker, handy and nice.” “I have one in my trunk, for you if you like; It’s purple with three wheels, a bit like a tryke.” “Purple! Oh, I’d love to see it,” said she. “A bit of color in my life would be good for me.” The trunk opened, and there she stood for a while; Her face had broken into a huge smile. “The walker is yours if you will agree That I’m giving it to you, no cost, it is free!” Lifted out of the trunk, with pride there I stood, It seemed ever so long, since I’d felt that good. “My old owner asked, “Can I give you a ride? “There’s room for the wheelchair and walker inside.” “No thanks,” my new owner said with a smile. “With walker and wheelchair I can walk quite a while.” And that began my love affair With my new owner; we had so much to share. She patted my frame and told me her tale Of many a trial, and many a wail. For years she’d had problems with walking and gait; Diagnosed with MS in nineteen eighty eight. Her symptoms increased and decreased, off and on But eventually the falling had begun. Her falls happened often on streets and sidewalks, In traffic near cars, in grass and on rocks.. She suffered many a cut and a bruise, But her pride kept her going; she didn’t want to loose. “You need a walker,” her friends often insisted. “I’m too young for one,” she always resisted. “You have a handicap,” they would reply, “No, I don’t!” my owner’d deny. Life has turning points – it happens that way, And this is what happened to my owner one day. Traveling with friends to England’s coast, To relax in the sun was what she wanted most. From the train to the guest house, a short distance to goNo hurry, no rush, they walked and went slow. Suddenly a car came speeding too close! Her mind said “run,” but not her toes. Falling hard, her head hit the curb-what a fright! The bloody result was really a sight! And then in her bed came the difficult fight; She tossed and she turned-it lasted all night. She knew what was best, but her pride was at stake. It was a hard decision to make.
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Continued With will over matter, mind over emotion; She made up her mind, sent her friends to the ocean, With determination, no longer at a loss, Behind a rented wheelchair she went to the Red Cross. She’d acknowledged her need; her decision was wise. She’d buy a walker, no matter the price! And that’s how my owner and I met, From that day on our relationship was set. On a regular basis she talks to me And tells me how I’ve set her free. She walks and runs, her feet are swift; Her spirit has been given a lift. Together we’ve learned, and this we know My owner and me, we’ll continually go. Our life is full for my owner and me It’s our relationship that has set us both free. I’m only a little walker with three wheels, that’s me My purpose in life - has given my owner and me – Freedom and Dignity.
Marise Beware of the Tail that Wags the Dog “Oma, the Empire State building is 1 ,250 feet high. How did they build that?” I’m beginning to wrap my mind around that question, sort of. Not something I’d ever contemplated. “Did they use a crane? Wouldn’t the crane fall over?” No use for me to even try to figure out because the questions pile on top of each other. I’m exhausted! I never thought I’d have to think in that realm…! Let’s go back some years. Well we raised our kids. The idea was that we’d do a decent job of it so that they’d be responsible adults, making a living, and raise perfect grandchildren for us. It all was heading that way, they married, and now we have 1 1 grandchildren. We could sit back, relax, experience the golden years. At least that’s what we thought. But beware of the dog. It’s not the dog that wags the tail that we beware of – it’s the tail that wags the dog! On the day I turned 70, our grandson, Aaron, moved into our home. The eight year old came with a diagnosis of ADHD. Before that diagnosis had been established, a range of“A” words including mild Aspergers and Autism had been briefly considered and tossed aside. What remained included bundles of Anxiety expressed through fits of Anger Going to a private school in Sacramento, his grades were not “A” words – more like “F”. Second grade. He was allowed to stay half days, and that only by swallowing drugs to keep him under control. Have you ever tried to get a highly anxious ADHD eight-year-old kid to swallow a pill?
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Marise
Contiued He was flunking out of school. Out of control. One meltdown after another. What in the world was going on? A kid with special needs. It was the tail wagging the dog. When did the out of control meltdowns begin? Was it the first year? Maybe, maybe not. For sure by the second year. Terrible two’s that continued into terrible three’s, four’s, five’s, six’s, seven’s, eight’s… Dad moved out. A tutor was hired. ADHD drugs were tossed. Aaron was beginning to have some control over his emotions. What about school? After an intensive search, a small Christian school using an individualized learning program was found. Perfect answer to that problem. One hitch. It’s located in Woodland. The family lives in Sacramento. Solution – move the ADHD eight, almost nine, year old in with us. A homeschool family is found to take Aaron two nights a week. He goes home on the weekends. Move forward from August, 201 5 to March, 201 6. Exhausted we fall into our bed at night, and sigh: “oh, this bed feels soooo good!” How thankful we are for the homeschool family and how we appreciate our weekends! Our “special needs” kid? Special yes, and gifted! Aaron’s grades are “A’s”, and he’s been on the honor roll for months. His meltdown energy has moved to loud happy screaming and singing. He loves to learn. It’s the dog that wags it’s tail.
Harold
Harold But I Never Do Anything You Tell Me maybe I misheard or maybe I misread maybe it's not a big enough deal maybe we've been mislead maybe I'm too lazy, don't want to start something now maybe were both too tired, took too many pills,
How Do You Wind Yourself Up Square wind-up key fits a square shaft fitted to spring loaded gears take turns winding my mechanism while my heart beats in synchronism I now feel alive as fluid fills my being then I turn, eyes opening to peer, at your beauty, aware of who my eyes are seeing...
Twilight Zone Season 4/Episode 4“He's Alive� Ending Narration Narrator: "Where will he go next, this phantom from another time, this resurrected ghost of a previous nightmare--Chicago; Los Angeles; Miami, Florida; Vincennes, Indiana; Syracuse, New York? Anyplace, everyplace, where there's hate, where there's prejudice, where there's bigotry. He's alive. He's alive so long as these evils exist. Remember that when he comes to your town. Remember it when you hear his voice speaking out through others. Remember it when you hear a name called, a minority attacked, any blind, unreasoning assault on a people or any human being. He's alive because through these things we keep him alive."
maybe it'll never get finished anyhow, ask me again in an hour or two see if I feel better after I get some sleep, get my due, so now I sit on my bed thinking what I must do maybe there's this reason I never do anything you tell me to do now I'm too tired to think what I should do with you telling me what to do...
Bert The Bed By The Window It was 1 988. Marise came home from her neurologist appointment with the confirmation that she had MS. Bert had never heard of it, but Marise being an RN, knew what it was. She was not surprised. She recognized several of those symptoms she had, over the last year or so. She educated Bert -her husband- that MS had to do with an attack on the nervous system. The sheaths protecting the nerves were being attacked, causing some of the neurological signals to be broken. Sometimes the information came through fine, and other times it would not. Sometimes she had a hard time seeing, but other times she could see a red light from half a mile away. She would get tired sooner. The doctor wanted to put her on medicine, but at that time most medicines used had worse side effects than benefits, so she stayed away from them. What about her dreams? Could she still fulfill those? How soon before she would be in a wheelchair? One thing she and Bert were looking forward to, was going overseas after retirement on some sort of mission, but that was still fifteen years away. Could she wait that long? Marise and Bert decided not to wait, but to look for some sort of mission they could do now. They looked around in their church. They never had any formal theological training. But then one time one of the missionaries supported by the church came by and explained he wanted to move his HQ from Southern California to Colorado Springs because it was much cheaper there. He was looking for someone who could do the accounting. After some talking, he somehow was convinced
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Bert
Continued Bert could do that, though Bert was not an accountant. His background was in agriculture. The missionary was not fazed and convinced Bert he would catch on quickly. Bert and Marise went support raising and preparing to move to Colorado Springs. When Bert gave notice that it would be his last tomato season in 1 993, his boss was elated and encouraged him. But why? His boss was not exactly the type who went to church on Sunday. In the middle of the season, the VP came by and we were informed that this would be the last year that the plant would operate full force. In the future only tomato paste would be processed, which required only about 75% of employees. That is when Bert got the message: leaving would not pressure his boss in firing one of his Superintendents. Somehow they made it, were in CS for nine years where Bert did the accounting. Then they needed a team to go to the Czech Republic, and Bert and Marise signed on for that. All along Marise’s MS was not bad or worsening much. But in the Czech Republic they rented a car one time, as they had done more often, and Marise tried to drive. They were visiting a beautiful castle where the roads were pretty good but not busy, so it was a great place for Marise to drive. She tried, but it did not work. Her right side had become weaker, to where she could not change her foot from the gas pedal to the brake. That was a shock! She was not as independent anymore. Both of them started to cry. The cobble stone streets in Pisek, where they lived, were not exactly the most convenient roads to walk on, especially when it rained or during frosty times in winter. One time Marise took three of her Czech friends to Wales for a week. They were crossing the street when Marise lost her balance just before reaching the sidewalk; a car came whizzing by from the left! She was used to cars coming from the right. She
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Bert
Bert
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fell, and her friends insisted she should get a walker! After overcoming her pride, Marise agreed and the next day went to the Red Cross to look for one. They did not have walkers, only wheelchairs. But they knew of a store a few blocks away that might have one. As she walked there with a loaned wheelchair for balance, a car stopped next to her and the lady asked: “Were you just at the Red Cross looking for a walker?” “I was,” she responded. “ I have two walkers in the back of my car, and want you to have one. Would you like a purple one or a blue one?” “The purple one!” she quickly responded.
slept that night. The next morning the nurses came to move him. Once settled in, he looked out the window, eager to see what John had described so eloquently. What a shock, when all he saw was a brick wall all the way up to where he could not even see the sky!
In 2009 they returned to California. Her MS had slightly gotten worse, but she could still do a lot of things. They found a shop where they installed a special pedal so Marise could use her left foot to drive. It was hard at first, but she managed and to this day can still drive. In 201 2 Bert and Marise were still able to make an RV trip across the country and Canada, and the years thereafter make bicycle trips in Holland, on a side-by-side three-wheeler. Finally in 201 4 Marise had to go on medication. Research had made big strides and medicines did not cure MS, but could delay its progress. This brought Bert to a story about two men: John and Peter. Both were bed-ridden. John had the bed by the window. Peter would ask: “What do you see John?” John described the blue sky, a woman walking with her little child. Another time it was raining and an umbrella would turn inside-out. Peter just soaked up the stories. John was getting worse. The stories became shorter, or he would say to ask him later. It did not get any better and one day John died. Peter felt so bad about that, but he also felt guilty, because now he might ask for the bed by the window. He asked, and it was approved. The next day he would be moved over. He hardly
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John Isham
The heels in the back of his slippers were so worn down that his shuffling gait seemed to him that it broadcast his presence throughout the house although that was really not the case. He made damn sure to tiptoe into the bedroom so that he would not wake Ellie. She had gone to bed early as was her want but he had stayed up for a few hours more lost in a reverie that he wished he could share with her, “if I remember it tomorrow,” he thought to himself even with the realization that the thought was probably lost for good, or at least for this year. “But I can save that memory for falling asleep,” he thought as he slipped off his bathrobe and slippers and listened to the steady breathing from the other side of the bed. The reason for his sentimental mood of course was his birthday that was due tomorrow, no today he realized with a start, he hadn’t noticed that it was quite that late. And as always his birthday signaled to him the anniversary of his first date with Ellie, one of those moments in time permanently etched upon his psyche even now some 40 years later crystal-clear in its detail but perhaps not quite in its accuracy. He reveled in the memory of their shared youth, optimism and budding realization that they just might be going on a date with the person they were going to marry. Little had they known how much that would prove true, that first date with their hearts in their throats, terrified that some little thing would spoil it all but making it through to the end, a quick kiss almost on the mouth the taste of which they would savor all night. And then there were the subsequent dates that became
progressively easier as they knew one another better until finally when their inexperienced fumbling’s had led to more and more physical intimacies and finally their making love. And how wonderful that had been, to finally share one another in the way that men and women were meant to do, fully encapsulated by their love for one another. And inevitably it led to their marriage in the backyard of great grandma’s big house in Grinnell Iowa. She was so beautiful! And what a lovely tribute to them it had become. And then the years started to run together the colors of each memory melding together in a sort of Brown soup that he found it hard to navigate through. The births of children and the deaths of children the good and prosperous times, and the lean times, their love still strong and helping to guide them from one challenge to the next. And as it frequently did when he indulged these memories, his heart started to feel so full that he thought it would burst with emotion and he cried out without even realizing it and she turned to him still half asleep saying, “are you okay dear?” And he, finding her hand beneath the covers held it between his and said, “no honey, it’s all okay, go back to sleep and I’ll tell you all about it in the morning.”
John Isham My MS Brain If you go to San Francisco in the summer time, you will see the fog barreling like an avalanche over the hills and engulfing the west side of the city. Sometimes it is as if my brain is being surrounded and swept away by a similar tide rendering me speechless and incapable of thought. At those times my imagination, like a leaf, drifts slowly following the contours of the skyline on its inexorable surge through the city. My cognition and memory act like the tall buildings around which the fog shrouds their bases, leaving only their tops exposed and accessible. That seems to be how my brain works sometimes, only the exposed points available to me in the midst of barely glimpsed memories, still there, but hard to make out. At other times memories seem to dance just out of reach, flirting and fluttering and daring me to recognize them and when I finally do, it comes as a surprise to me, and I am grateful that they haven’t flown away entirely. I am very grateful that my brain fog is not as predictable and regular as that in San Francisco when half the city is embraced and cold and the other still warm in the sun. Somehow, I am fortunate enough to remember the fog in San Francisco in the summer time.
Maureen McGee Rotondo
Maureen McGee Rotondo An unexpected feeling
Six (erotic) Word Sentences Coupled together, they ignited the night. Flashes of illuminated skin were seen. Moans thurdered through the pulsating air.
Prompts: construct six word sentences that are erotic
I hadn't noticed that he was having problems because he is so apt at working around it. His ability to make things look seamless was an art he had perfected over his years living with MS. He extended his arm and laid a hand on her shoulder to comfort her. I could see his pain once I studied his movements more closely as he thought no one was looking. She was oblivious to his discomfort. Her pain was all that mattered to her. Unfortunately, she didn't care about anyone else and was incapable to reciprocate his kindness and comfort. My heart went out to him. It was hard for me to see this kind of human interaction. It made me feel as if no one cared about anyone as if we all live in our own little cocoons, isolating ourselves from everyone. I was going to rebell against this trait. I was going to comfort him as best as I could. I got up from my prone position and buzzed around his ears thinking he would hear my words of peace and love. His reaction is one I didn't foresee. His hands moved so fast I had no time to react. And all I remember is a gust of wind pressing down upon me as the light was blocked from sight by his hand that came down hard on my tiny fly body. Life as I knew it was over.
Maureen McGee Rotondo
Maureen McGee Rotondo
The Machine
Blaming MS Unjustly
The interworking of the machine interested her. She became obsessed with each detail as the cugs of the wheels spun. Her eyes sparkled with fascination as she watched the different shapes and materials working together seamlessly. The noise level was oppressive but she was adamant in her refusal when offered hearing protection. She stated she wanted to hear the heart beat of the machine. In her mind the noise and vibrations made her one with the machine. A system which was much simpler than her life. Although there were countless parts in this machine, it still was less complicated than the burden of emotions and feelings that she had to deal with on a daily basis. Emotions and feelings she had no way of sorting out nor understanding. Here with the machine was like being in Paradise. Everything moved. Everything had a function. No useless, wasted materials here. All working on an exact line nothing left for the unknown. Everything was mapped out already. Day in and day out it was the same. Not like dealing with MS where you are surprised each day with a new challenge you must learn to overcome. No maps here since everyone is unique, everyone is different.
The flood gates to the dam broke, letting water and debris rush out like a violent hurricane. The water took with it all in its path. Leaving behind mayham and destruction. The situation was turning urgent as the roaring water approached a small town and help was no where to be found. In this town, I was getting my meager breakfast together. Laying out my silverware and napkin at the patio table, I prepare for my meal of a hard boiled egg and a slice of toast without butter. Thinking to myself, "What should I do today?" There is little to do in this community, especially anything exciting. I sit down in the wicker chair and start cracking open my egg. Hearing the cracking sound, it seems so amplified. It must be my MS acting up causing my hearing to be whacked. I continue with the process of eating the egg but all of a sudden I am flung from my chair and transported at rapid speed thru my backyard and into town. All the while trying to breath in this new environment of rushing water and broken structures.I am hit with all sorts of fragments from the buildings that had surrounded my home. I saw wood, stucco, metal, and bricks tumbling around me as I am pushed under the water surface by the mere movement of the water. This churning about disoriented me from knowing what was sideways let alone up or down. All of a sudden I am launched from the water and find myself flying through the air like a bird. All the while feeling freed from the oppressive weight of water and my disability. As I soar through the air, I spread my arms out like a bird's wings. POW! I collide with the side of the mountain. Ending my glorious flight and my life.
Prompts: she was adamant in her refusal, she became obsessed with each detail, witch or which.
Prompts: sore or soar, urgent, nowhere to be found, flood gates
Loreen Hammett
Don’t Sweat the Small Stuff
Once upon a time… In the forest grows this plant that has the most could count. The colors were in a spiral shape, beautiful flower. The colors – the size, amazing! swirling around the inside of this tiny little flower. The plant itself only grows to about three feet in The more I looked, the more I magnified my height. The stock is very thick but the sides aren’t vision, the more this flower amazed me. There was smooth, they are corrugated. The leaves are very movement inside there! I must be tired. I blinked broad and long, about 1 2”x24” each. They are a my eyes a few times and looked again. No it’s deep burgundy color with a soft furry feel to them. true, there is movement! So I increased the When looking at this plant, it reminds me of an magnification even more and what I saw was actor. Oh you know the one who played Cousin It shocking. The movements were tiny little beings! I on the Adam’s Family Show! The leaves flow and seem to have stumbled upon a miniature world drape over each other nice and smoothly. Without tucked safely inside this pretty itty bitty flower. I really getting into the plant, routing around in the saw some kind of plants, animals, and seemingly leaves, you would never know there was more to everything we have out here in our big side of the this odd looking plant. The flowers are hidden on world. I need to preserve this flower. What an the backsides of the leaves. Not very big, in fact amazing discovery. Hey wait a minute, where’s quite tiny. I’m quite certain that many were that bright light coming from? I went outside to knocked off prior to their discovery. The flower is see. Looking up I saw what appeared to be a giant about the size of a single grain of rice. I spied into eye staring at me… one of these flowers using a microscope. To my utter amazement, there were more colors than I Prompt: you know the one
Annette Morehouse
Annette Morehouse Broken Things I love. I always want things whole, But the world does not present wholeness to me I see parts of wholes and holes in the parts.
Second Grade.
With all the broken parts I try to form a whole and it has holes, but I live with the holes
A new school, just one block from my house, a brand new school and I was going there.
And learn to love broken things as if they were whole.
A new teacher, Mrs. Sawyer and she was nice. What fun we had the stories she told and the books she read to us. There were plants which she showed us, when you touched the leaves they would curl up and then later would have uncurled. Mrs. Sawyer had an Autoharp and we sang and then we would read (a little) and she told us stories about California history. I could not wait to get back to class from recess and lunch, I do not remember specifically what Ilearned...some reading, some numbers. What I remember the most was that somehow I was encouraged to think and to bravely put my hand up and to talk. Whatever I said was Ok, never stupid or dumb. The best thing I learned was that my name was Annette not Miss Morehouse. I never really got over being afraid of the world but Mrs. Sawyer showed me the wonder that went Beyond the fear.
This is multiple sclerosis, lots of holes in the whole, lots of broken things, Lots to love.
Annette Morehouse Stolen Thoughts Of A Bad Day (Bambi’s Life Lesson)
As Bambi nibbles the grass and sniffs the flowers, A butterfly flutters by A bird twitters in the tree The sky is blue The grass was green as moss All was glorious A garden of Eden Over the scene A Single, Great, Reptilian foot crashes down And Bambi becomes a splat among the Flowers A single reptilian toenail retracts. Smell the flowers, if you will, but do not Stay long in one place"It's a Life Lesson!
Contributers: Maureen McGee Rotondo
Loreen Hammett
The Observer
Annette
Because We wouldn't be us without her
Jan
Because every writer needs a muse.
John Isham
I like the sound of words as they tumble into one another
Irene
David Ruiz "See Me"
John
Reading is almost as much fun as writing.
Wherever he went, there he was.
Len Silvey
Harold
"please allow me to introduce myself, I'm a man without taste!" Rolling Stones: Sympathy ForThe Devil
I am often amazed at the words flowing out of my pen.
Marise
"Take the first step in faith. You don't have to see the whole staircase, just take the first step" Martin Luther King Jr.
Bert
"Life begins at the end of your comfort zone." Neal DonaldWalsch
Len writes because otherwise it would never be said