And My 2012 MS Journey Begins with ...

Okay, I meant to post that last post today, end of the year positive send off and all. Now THIS happened. (fake frowny face)

This morning at 6:15AM, I walked (with my walker) three steps out and three steps back. I am over the moon!

Seriously, I don't "do it up" on New Years Eve, when I was younger, twenties, but no more. Always thought that was just the natural way of things, until I moved into a retirement home with a community of 70-103 year olds. Now THEY like to party! I'll have to take a photo of the recycle bin FULL of booze bottles. (Is wine booze? I don't drink.) My Aunt Violet, who lived to 103, used to have a shot of whiskey every night. I used to call my mom and Aunt Vi at midnight every year after I moved away from home. Now...eh. Maybe each year was always too full of some health crisis. In Jan. my partner begins anew her breast tumor journey. I guess I am in no hurry for all that. But, today I got a gift. I walked sturdy and strong.

During this week I also believe I may have found a publisher for a short story about my move into this retirement community. Very exciting stuff. Really, I am feeling over the moon! This is how one should feel on New Years Eve---full of hope and wanting to celebrate the wonderful possibilities that lie ahead.

While I am not into resolutions, I will share with you my big goals for 2012: Finish my book. Walk more and more. Stay strong through whatever health crisis arrive. Bring more friends over to visit. Re-elect Obama.

This will keep me very busy. I apologize now if I don't pay enough attention to my blog or yours. Believe me, I will be thinking of all of you. And I thank all of you who have supported me along my day's journeys. Peace and remember: NEVER GIVE UP.

Find Happiness with Chronic Illness and Disability

Chronic illness, disability---powerful words that few use. Since I have a MS blog and a "Chronic Illness 100 List," I tend to read and use these words a lot. Believe, more than I ever dreamed I would.

By the end of our life's journey (and a shout-out to modern medical science, er, did anyone ever mention that quality might be more important than quantity?) most of us will use these words.

Perhaps it is just verbiage, just garbage, to describe the downs of life. Life is full of ups and downs. As I like to say, such is life. And while it is human nature to want to be happy, our instincts tell us that we must be well, not ill, to be happy. Perhaps. I am just too impatient for the rainbow to show me a pot of gold. I will be happy NOW.

How do we do that with illness lighting the way to a bleak outcome? First we must realize the final outcome fore everyone, man, woman, and animal alike, is death. Clearly you and I are not dead yet, so it appears we some time left to search for happiness and find it. Simple? Difficult? Only you can answer that. I choose happiness. Though I fight my fears, which are many, it just seems life without happiness is as worthless as a Newt Gingrich nickle.

See? That made me happy. Laughter makes me feel happy. I like to laugh at this crazy life-thing and I like to laugh at myself. Once I signed up for a stand-up comedy course. My cane joke flopped like a pissed off trout on the hook. NEXT.

"Next." Now that is one great word. It shows there is always something out there to try on your chosen happiness path. "I TOLD you I was sick." We have seen that on tombstones. Somebody got the last laugh. I love it.

There are so MANY healthy people out there. Some of the saddest people I know. Now, I do NOT believe "when you have your health you have everything," biggest lie on the planet, but it certainly can make a quest for happiness easier.

My hope is that this blog and my stories herein, have given you a laugh or two along the way. That thought makes me happy. NEXT!

MEN: Secret Revealed to the Woman QUESTION

Yes, I said "win." You men know what I am talking about. (LGTBs can take note too.)

It is all about THE QUESTION, and your answer: "Do I look fat?"

Now, this may be slipped into another conversation, in the hope that it will be 'missed' for what it is. Women may also attempt to camouflage it with, "Do I look fat in this?" Or, the real time bomb, "Do I look like I'm gaining weight?"

The correct answer is NO. Always NO. Not sometimes, but always "no." And DO NOT hesitate, not for a second. Practice this if you have found the woman you want to spend the rest of your life with. It may be shot at you from close range or far away, so never let your guard down when you hear the question. Even after 30 years of marriage, one day...when you least expect it...BAM!

The incorrect response can never be taken back. And after you screw it up, there is no getting out. No matter if you had ear wax build up and missed the moment, no matter if she is as thin as the day you met her, no matter if you have gained much more weight than she has---NOTHING WILL MATTER. Logic and rational observations will go unheard. Don't try to explain that women were built to gain weight as time goes by. Don't bring up Venus or Raphael or how "during the 1600s" JUST DON'T. You have entered the zone of illogical. You have been femaly-busted.

Should you fail be swept into the, "But, you MUST tell me. You are my spouse, my best friend, who else can I ask!? Please, please, I WANT to know." Should you not follow my advice and order a dozen red roses the next day, then you see all is well again. Remember the theme music from Jaws? Da dum. Da dum. Da Dum DaDumDaDumDaDum---it WILL come out of the water again when you least expect it.

Just say, "no." Smooth, glance at her and say 'no' within the same second.


(If she is pregnant, it is okay to acknowledge her body changes, but only with many hugs and kisses.)

I Don't Like Holidays

I just realized I don't like holidays much. I prefer the routine of day to day action.

Day After Christmas, Merry Men Beware

Now Christmas Day is over. This is what we call our "Ahhh Day."

All the stuff from the holiday is put away. Our tree comes down (our tradition, calm down, it goes UP early in Nov. )

When else is the word "merry" used as much as on Christmas? I am merried out. How merry can one blogger be!? I am happy to be alive, that is good enough for me.

Our favorite gifts are received and let the play begin! CALENDARS! We both love to plan and organize. The movie of choice is "Rise," something about monkeys, ala, Planet of the Apes.

Ahhh...the big day is over. So quiet outside, so peaceful.

Ahhh

Christmas Eve Magic, Movies, Laughter, Memories

So the Eve is upon us. Nothing says Christmas Eve life a good holiday movie. Tonight we shall watch "Prancer." If you have never seen it, you should. If you have kids, they will love it. If you get all woozy over hunka-hunka men, you'll love it. Sam Elliott's voice rivals them all. No, we're not poor! We have apples! Apple pie, apple jam, apple bread, angrier and angrier with each clip of an apple branch from his tree. Classic story about the magic of Christmas.

Or you can go old school with "It's a Wonderful Life." Whenever you feel down about yourself, when you have done your best and come up short---watch this movie.

I have had many years of family Christmas Eve's, ones that can NEVER be matched, for that I am very grateful. No matter where life takes me or I take it, those Christmas Eve's will never leave me. Good job, Mom; Well Done, Aunt Vi.

Christmas Eve: Magical, Exciting, Family, Friends, Joy, Laughter

We all can use more of all that!

Finding the Meaning and Seeking Happiness

We had a 'flu bug' or something akin to that at in my retirement community abode this month. It is pretty much gone now, but when you are in your 90s, the effects can last long.

My term as president of the resident council here is over Jan.1; I am not unhappy. It was a good run and I enjoyed it very much, but it was a great responsibility and I'm ready to concentrate on my writing.

Last month a magazine bought one of my blog posts about MS. This was a surprise and quite humbling. I expected it to appear in the Jan. issue, but it was in the Dec. issue, so I didn't really get a chance to give it the proper promotion. The editor says there may be a next time, so I will be on the ball then. While I have been often, over the years, contacted by drug companies and medical devices to allow them to advertise on my blog, I have turned that down and will continue to do so. Big Pharma and I are not friends, in fact I told off one rep.big time, he said, "I read your blog often and..." so I had to counter that if he had IN FACT done so he would KNOW I would have no interest in his money for my blog space. I am very experienced in saying, "Go to Hell," in a nice way. (I must have some Southern Belle in me.)

Writing about MS has become a responsibility. But, I am, as they say, torn between two lovers, my blog and my book. Anything published before the book, is good for my street cred, so I must begin my balancing act. If my finger holds up, well, we shall see.

Christmas is a responsibility, the holidays, whichever you celebrate or if you celebrate none---a responsibility if taken seriously. Rip away the decorations, the symbols, the credit card debt, the greeting cards, the food, and somewhere in there is the true meaning (as Linus would tell you), which we all must find and emphasize. THAT is the goal of a happy holiday---finding its purpose, filling your life with its meaning and intent.

Reflection is more important to me than celebration. When crowds are cheering the end of a war, I am reflecting. There is responsibility in reflection, one must question, seek truth, act on the path ahead.

Many dicker about which holiday to speak of, which holiday will be theirs, exactly how others should act---I am a practicing inclusionist, and that is the greatest balancing act around. But have I something better to do? Am I so important that I can't take the time required to seek such balance? My answer is no. In fact, I believe it is my mission as a human being. We are a world of many different minds, thoughts, beliefs and I wouldn't want it any other way.

My wish is that everyone would slow down, seek truth, enjoy the journey with others, and in so doing will find where happiness lives. Then, proceed there as best you can.

Rite of Passage Santa Photos

Here are photos of my partner with her older sister, and me for the absolutely necessary "photo with Santa." As you can see, neither of us gave a hoot's hoot about Santa.

Since neither of us have any other such photos, we can only presume this fulfilled our parent's desires.

My fancy attire makes me think that my great-aunt Violet was behind the Santa connection. That Ft. Wayne Santa was a hometown favorite. He was on the job for many years. My partner's looks like a Detroit auto worker looking for a few extra bucks. My Santa sat on a throne, hers...not so much. Plus, her pic looks like a quickie, no coats even removed. She remembers trying to walk away, Santa grabbing her tightly by the arm.

Neither of us feared those Santa's, just found them boring.

In future years I would stand far away and peer at my peers on Santa's lap. I just didn't get it. Of course my ornery older brothers blew away the Santa myth when I was very young, so it all was such a huge adult conspiracy that my mind could not wrap around. "Don't lie." Yet, there the grown-ups were, lie after lie. Flying deer, fat men down thin chimneys, etc., etc., but the baby JESUS---not that was the truth? I spent a lot of Christmas time looking at grown-ups and wondering if they were not from UFOs. (Which ALL agreed existed!)

Santa Claus, your North Pole digs,

Your flying deer, your many wigs,

How dare you put me on your lap?

What I WANT is to be done with this crap.

Ho Ho Ho

Gifts: Cry, Laugh, Tis The Season

Above is a photo of a Christmas gift I gave to a friend. "Tired Old Ass Salts." Useful, yet whimsical, it mad for a good laugh in my retirement community!

Gifts are often just a potshot, you hit and sometimes you miss. When I was not yet 5 years old, Santa (my mom, older brothers blow such fibs pretty quickly and with great pleasure), left a HUGE box for me. What on earth could be inside? My mom seemed more excited about than I was, must be good!

I opened it up, needed mom's help in pulling it out, YAAAAAAA!! I started screaming bloody murder. I was terrified at what I could only describe as a witch! Frightening hair sticking straight up! My brothers started laughing, always fast to take pleasure in my fear, and mom had the most upset look on her face.

"Look," she began as she pulled IT out, "it's a dog! And see, you can comb its hair."

With tears rolling down my shaking face, all I could think was, "That is NO dog *I* have ever seen!" and "COMB IT? I can't even see any eyes! Where would I begin?!" It was meant to be a shaggy sheepdog with long brown hair, fun for a child to comb. Thus would begin my (according to the laughter and dismay that I know this post will bring from my partner) apparently difficult nature to buy a gift for that I don't think: What the Hell were they thinking?

Again, no point in my showing examples, gifts are all about the thought and all are given, well, 99% are, with the intent to please me...I'll leave it at that. The shaggy dog is not a good example because in that case it was all about the presentation. Once I found they eyes, it was fun to comb him.

My poor partner, so often she hears, "Have you EVER in ___years SEEN me wearing___?" I'm sure I am particularly hard on gift-givers because I consider myself especially adept at giving good gifts, presentation et al. No one will deny that. Aunt Vi taught me about finding the perfect gift and she was the Guru.

To wit: One year I ordered a very expensive perfume for partner. It arrived. I wrapped it beautifully. On Christmas morning she opened it, "THERE is the body wash I've been waiting for?!" Yep, I didn't know $2.99 soap from $199 perfume. (My order hadn't gone through and she had been waiting for her soap, er, body wash) (GIRLS. I can get soap for 99 CENTS---I digress)

Oh, oh, oh, and one year when Aunt Vi was in her 90s, I bought her a very fancy perfume in a very fancy container, a skater danced around, music played when opened...she didn't seem too thrilled. Many months later I would learn that neither she nor my mother could figure out how to use it, so it sat in its box. My brother finally got in working for her. Like I say, sometimes you hit, sometimes you miss.

Now that I have less money to spend: presentation, presentation, presentation.

Any funny gift experiences you've had?

The Christmas Cookie Fight

My partner and I rarely, "fight," as a matter of fact when we DO, we remember. Such was our unforgettable "Christmas Cookie Fight."

Her family was coming to our apartment for the holiday visit. She was very excited. Me? Not so much. You see, her parents never liked me. Now, I can (and will, a few) give you some reasons why I know this, but some of you will feel I am biased or just too sensitive, so be it. The fact is they wanted me out of her life from the day they met me and every year after. When I was diagnosed with MS, they hoped that would soon end our "fling." (That was 11 years into our relationship.) After I was diagnosed with cancer, they could not hide their hopes for a final chance for their daughter's freedom. (That was 16 years in.) But, darn, if I didn't just keep hanging around as long as they lived.

When we first got together, they brought a surprise guest to our first meal out with them---a young man they thought had dated their daughter in the past and he would certainly remove my spell over her. They sat him between her and I. Diane was not pleased. Diane's family LOVED their daughter and within months we would move to MY state. They were not pleased, but message received. I would not tolerate such childish theatrics from two adult, liberal-minded (as long as it wasn't THEIR daughter, no, my FIL was cool, but the MIL lost all her hair after her daughter finally said the words, "I'm gay, Mom," and she then refused to speak to my partner for many months. Sigh. Over the years they would try other things to cause friction between us, but to no avail. They never gave up until their daughter became very ill and so did they---I was looking pretty good then. (25 years in)

And also making a rare appearance would be my partner's only sibling, her older sister, with her husband and two daughters. In a nutshell, the former hippie sister couldn't stand me either, but her issues were many and far beyond just me---she kept her girls from her parents and us. They were discouraged using psychological means, I still doubt the sister knew what she was doing, but it was a harsh blow to the grandparents and to us. Now they are far, far, away from us in spirit. The kids only know of us what they have heard, and those few holiday visits where one or both of us were ill. Back to the cookies.

We decided to bake cookies. I think *I* decided it, since I doubt my partner had baked cookies on her own in her life. Regardless, when it came time to decorate them, all hell broke loose.

Now, there is NO question that my partner is the artistic one. She is gifted at drawing, painting, graphic designing, and we, er, disagreed at how the cookies should be iced. We had them baked, cooled, laid out on our large table with all the production necessities about, very organized as we both are. It was an hour before the family was to arrive---what could go wrong?

Let me stop right here. One Christmas (20 years in), at the sister's house, the parents gave everyone a gift but me. Now, look, I couldn't care less about such childish slights, but what angered the heck out of me was their total ignorance about what such behaviour was doing to hurt their daughter! So MANY times I wanted to tell them just that--it is NOT me you are hurting, it is your daughter you profess to love so dearly! But I always kept my mouth shut and so did she. In fact, keeping her mouth shut, holding in her anger, is a trademark of my partner's.
She is the kindest, gentlest soul I have ever encountered, to a fault as *I* believe one must let it OUT. The only time I had ever seen her let out anger was over... popcorn. Yes, we were sitting after a movie had ended, reading every last credit as we do, when the cleaner-uppers start walking in front of our view. I said to the one moving in FRONT of my legs, "The movie has not ended yet. It would be nice if you would wait until we are out to..." He interrupted me with a smart aleck, "EXCUUUSE ME."

When we left, still holding my not quite finished popcorn, I asked to speak to the manager, a woman about 25 (as were we) and she acted rude. Holy 16MM! The next thing I knew my partner was FLYING over the counter at the mgr.! I had to haul all 110lbs of her flailing body off the counter, away from the frightened mgr., and out the door, PLUS she was shouting the entire time! SHOCKING. I loved it. My protector. That still makes us laugh hysterically, so not like her.

The NYU film school director in her came out 45 minutes before her family was to arrive and our love/joy/happy-happy faces had to go on---she did NOT like the way I was decorating the cookies; and my Irish Aries with Mars rising temper took great exception to her choice of where the sprinkles should go! We raised our voices, started yelling, slapping icing here and there (see end product above) and then it happened.

Only in movies and on the sidewalk to the home for the mentally ill on Capitol Hill in Seattle have I ever seen such a RED face. It looked like her entire head was about to explode! "Knock-Knock"
The family had arrived.

Well, the show must go on, we quickly pulled ourselves together and opened the door with the most jolly, "HI!" you would ever dream to hear. Just hysterical when we replay that moment now. And most of the cookies were eaten, no questions asked. But, seriously, just LOOK at those sorry-ass cookies. I'm pretty sure the cat was my doing.

The Christmas Tree Skirt

Above is a photo of my Christmas tree skirt. Aunt Violet made that for me when she was in her 90s and almost blind. It took her many months and she wrapped in, then mailed it over 2,000 miles to get to me. Christmas will never be the same without her, of course that is always true---a day can never be the same, but for my cousins still left who celebrated Christmas with Aunt Vi, we all feel a special angel is gone.

Actually it was Christmas Eve when Aunt Vi held the big party. Relatives flew in, drove in and walked in, strangers arrived too, but Aunt Vi knew us all. I think anyone who showed up would have been and felt welcomed. So many people!

Aunt Vi and her longtime companion, Ivah, were baking, cooking, and wrapping presents for days in advance. Their large, entire top floor of their house was immaculate with holiday decorations everywhere, many made by their hands. I loved to watch them prepare for the Eve, and I loved to count all the wrapped presents kept in waiting on Aunt Vi's bed. To a child, it was truly a MOUNTAIN of presents. Nobody, even the surprise guest, would go away without at least one wrapped gift.

The food was absolutely perfect and another mountain! No stomach would not be filled. Fresh baked pies, cakes, cookies, along with a turkey or ham, mashed potatoes, and many choices of booze!

Santa often arrived. There were always kids. Laughter indeed FILLED the house. No fighting, no awkward relative meetings, just joy and fun. Before night's end, Aunt Vi would drive us downtown to watch the lighting of a big Santa and sleigh display above our biggest deptartment store! That was Christmas Eve with Aunt Vi.

Christmas day was spent with my family unit of Mom, two older brothers, and me. Mom's big day to cook, She made us each our own little cornish hen! It seemed like a miracle that I would have an entire hen to MYSELF! Then we opened presents from Mom. I knew that some years Aunt Vi was financially behind the gifts, but we all played along that THESE presents were from MOM. We kids gave Mom a gift too. (Aunt Vi made sure of that! Aunt Vi and Ivah worked in a large, for Ft. Wayne, department store, so gifts were easy to come by.)

Aunt Vi knew one day I would miss those wonderful times, and so she sewed by hand, by memory, a skirt for my tree that looks just like the one we gathered around each Christmas Eve.

Decorate Cheap and Feel Rich

Most of the decorations on our tree are old Christmas cards. This is a great way to keep them, reuse them, and we just think they look great!

It is now the week of holidays, Hanukkah, Christmas, Kwanzaa, and probably some I've forgotten. So, my blog for this week will be nothing but posts filled with joy, celebration , love, oh, and one big family gathering fight that I hope you find as hysterical as we do.

In other words, no politics, no gender debates, no financial woes, no health drama, just old-fashioned good-times! 'Tis the season!

Men Who Cheat and Woman Who Love Them. Hypocrites All.

A friend with secondary progressive MS, like me, was chatting with me yesterday and she was very upset, angry really. (Women get upset, men get angry, right?) As my loyal readers know by now I am a liberal Democrat, born and bred, runs in my blood, though I never dismiss anyone, Lord knows I've fought my genes many times, but if I lean off course it is usually toward an independent, green party, or some socialist. I doubt I can lean to the right, but I am young (LOL, yep, I said it) and I keep my options open. Anyhoo, my friend was as mad as I've ever heard her--over husbands cheating and leaving their wives once disability steps into the picture.

She made the comment, "And they know we are too disabled to write about it!" (Yes, it has happened to her.) Well, somehow I have been blessed, er, lucky, to still be able to write about anything I want and especially appalling to me are stories about what I believe many WOULD write about, if they could. Living now in a retirement community, I am filling up with stories FAST. Back to my friend with MS.

Apparently Meghan McCain, daughter of Arizona Senator (and former presidential runner, Hanoi survivor, you know the guy) John McCain, is selling her latest book. Ms. McCain has been on many 'talk shows,' Fox News, blogger, writes for The Daily Beast--she has opinions and people are anxious to hear them. Sometimes she agrees with her father, sometimes not--people like that stuff. She strikes me as a mini-John McCain, trying to not be boxed in, labeled, just most of us. Again, however, it is the cloud that won't just disappear when she speaks of how great her father is: He married a swimsuit model who, after being disabled from a horrendous car crash, became no longer the sexy bombshell he married, but more of a drain on his desire to have sexy-bleached blonde young model sex. So, he started having affairs, until he married (well, I have no idea how many, if any, affairs he has had on current wife, wives always get too old at some point for such men it seems...) Cindy McCain, much younger wealthy heiress of a beer company.

Ross Peroit, according to reports, paid for much of the first Mrs. McCain's surgeries after the car accident (John was in Hanoi prison) and has said, "McCain is the classic opportunist. He's always reaching for attention and glory. After he came home, Carol walked with a limp, so he threw her over for a poster girl with big money from Arizona. And the rest is history."

Carol McCain sees it differently, "My marriage ended because John McCain didn't want to be 40, he wanted to be 25. You know that happens...it just does." John also agreed to pay for all Carol's medical bills for life. But 2+2=4 and when a wife becomes disabled, or gets cancer, AhhhnewtgingrichCHOOO, excuse me, other healthy, young women start to look much better than any marriage vow. You've heard that vow? "...in sickness and in health..."

That hypocrisy among GOP men who give their speeches about "morals" is enough to make Mother Teresa mad! And any woman who has been dumped for a younger model feels the sting of that hypocrisy, if she has any feelings. So, Meghan, when you speak of how great your dad is, remember your slip is showing if you imply he has strong morals. If you say you are his oldest daughter, remember that he had a daughter before you with that disabled former swimsuit model he dumped. OR, keep "morals" and "character" out of your political equation, because your father's math is, uh-hem, FUZZY.

Another close friend of mine who has MS, HER husband actually told her, in the car after leaving her neurologist's office and finding out that she had MS, that he wanted a divorce because he knew he couldn't handle it.

Before I end my post, my personal feeling is that this total disregard for marital vows of men (GOP or DEM, AAAAjohnedwardsCHOOO) whose wives become ill in some way and they in turn seek solace in the beds of young women IS so disgusting, cowardly, and plain filthy, that not ONE such man should dare bring up character or "God" or morals in any words out of their mouths. Any man who dares to accept awards for his "molding of young men," and is then found to be raping them should be FIRED, MIRED, and never HIRED anywhere but the prison laundry room. Any "Man of God" who is molesting children should be (see above PLUS) DE-ROBED.

And those who overlook such actions, forgive and forget? Unless you can somehow make all the harm you have done forgotten, wiped away from the universe, then don't EVER preach to anyone about what is right and what is wrong. That makes you a HYPOCRITE. And we are a better people than to be led in any way by YOU.

Too Old to be Cared For: Characters I Have Known

Viv always wore purple. She was 99 years old. We sat next to each other in the dining room. Her two sons were very attentive, but like most adults who place their parents into a retirement/assisted living home, both had full-time jobs and were very busy.

When I met the one son my gadar was on high. He was very loving and visited often.

Viv didn't hear well, but well enough. What I remember best about her was that unlike the rest of us at our table, she ate EVERY BITE on her plate, EVERY DAY. The portions were often large and the meats were sometimes so tough I could barely chew them, but not Viv.

Every night after dinner, Viv went to the movie room and 'watched' a movie, actually (and she was the first to admit this) she went there to sleep in the over-sized, comfy, chairs.

One day I saw her sitting in the library. That was unusual. I asked her how she was and she said she had fallen. Then a caregiver appeared and told me Viv refused to let her call the medics and her sons couldn't be reached.

I rolled up close to Viv, "Viv, do you hurt?"
"Yes."
"Where?" She pointed to her hip.
"Viv, can you stand?"
"No. It hurts."
"Viv, you should let some medics check you out."
She frowned, "NO. I don't want my sons bothered."
"They won't be bothered."
"I'm afraid."
"What are you afraid of?" She looked away.
"My clothes are in the laundry machine."
"I'll take care of your clothes."
"What will they do to me?"
"They will poke you and listen to your heart, maybe take you to the hospital for an X-ray."
"An X-ray?"
"You might have broken or fractured a bone. Maybe you just pulled a muscle, but they need to be sure."
"I put my clothes to dry on a string across my balcony."
"I'll make sure that happens. If you can't stand then you can't go to the toilet. Will you let us call the medics. We will make sure your sons meet you there, ok?"
"Okay." The resident staff caregiver was standing there, I nodded to her and off she went, only to return moments later and she motioned me aside. Viv's son had been contacted and he said that his mother was overly sensitive to pain, so the medics would not be called. The hair on my neck went up. I phoned the front desk and the staffer there reiterated what the caregiver had said.

I said, "Okay, but this woman can't even stand. I will call YOU when she needs to go to the toilet and YOU will be held personally responsible for making the decision not to call a medic."

Over the years I have found that making someone aware that they will be responsible, that there is someone who bears witness and will speak up, usually gets them to make more sensible decisions. (CTA, cover thy ass)

The medics arrived, the staff CNA had left for the day (Viv was living as an independent at my facility), and Viv was all alone in the library when the medics arrived. My mother's voice was again in my brain saying with disgust, "This is none of your business." I moved away, but close enough to hear.

They tried to get her to stand but she cried out in pain. They poked her in her groin area, again she grimaced. Then I heard the one say to the other in a low voice, "She is almost 100." followed by, in that condescending 'I'm speaking to a 3 year-old tone,' "You sit here awhile and you'll feel better." They began packing their bags. THEY BEGAN PACKING THEIR BAGS!!

"What are you DOING?" I said as I moved in. "This woman can't stand! She was walking an hour ago, she fell, she is obvious pain!"

"Who are YOU?" the one tall, strong medic said.

Opening my cell phone, I said, "I'm someone who cares! Would you like to speak directly to her son?" (Yes, a bit of a bluff, though I didn't have his number, the front desk DID and I would get on the manager if I had to, but that wasn't necessary.)

The medic bent over to her, "Viv, we are going to get you to a hospital, for some tests, okay?"
"Yes," she said softly.

I never saw Viv again. She was moved to a nursing home. I did make sure her laundry was taken care of.

"She is almost 100..." Sigh.

Nature, Nurture, or Computer?

Once debated up the wazoo, the old nature vs nurture issue regarding what molds us, now must add "vs computer." Children who are starting formal schooling at younger and younger ages are also introduced to the World Wide Web sooner than even Bill Gates or Steve Jobs ever imagined.

Parents used to feel safe believing that the school they chose for their little ones would only teach what THEY wanted taught. But we all know now that even the most private of schools can not keep computers out of their classrooms. Do so and hold children back in the middle ages compared to their peers.

Ask a child, "Where did you learn that from!?" and prepare to hear the name of the newest molder---the computer. As children mimic adult behaviours, watch them pretend to be talking on cell phone, fingering that laptop, and laughing at cat videos. The new McBabysitter just needs WiFi, not even a wall outlet.

In the next decade we will be looking at our young adult population and asking, "Was she born that way? Is she a reflection of her parents/village teachings? Which social media networked her?"

Can't Stop a Bully Alone

With all the recent attempts to put an end to bullying in schools (and 'end'? never gonna happen), I thought I should write something about it. Here goes:



When I think about my years in school, I never think about ever being bullied. The only bullies I knew were my brothers, and they were only bullies to me, so they are in a special category, and certainly I never feared for my life, nor did they ever physically abuse me in any way.



Yes, I was a gay kid, but in school there are priorities and the visual rules---I was fat. In the early years I was able to counter balance that by being smart. But fat was most important to bullies. This is true because bullies look for mental weaknesses, kids with weak self-esteem, and most fat kids had little self-esteem. For some reason(s) my self-esteem was intact. I hated that I was fat, but I saw no way out. TODAY I would have been all over exercise and healthy eating, but in the early '60s such things were not even discussed in Ft. Wayne, Indiana. I was fat, my brother was fat---our beloved Aunt Violet saw to that. "You are just big-boned."



This doesn't mean there were not bullies in school. There were, and we all knew who they were. We tried to stay away from them. Through my elementary school years we stayed with our same group of kids every year. K-6. Not sure if that still happens and it certainly made going to a new school building with all new students quite dramatic. So, the bully was never in any of my classrooms, yet somehow he found the fat kid and began calling me names. I was good at ignoring, which infuriated him, so he began threatening...to kill me. He had a "gang" and he had a knife and yes, he took it into school. No one ever busted him. He was, of course, set back so many times that he was about 4 years older than the rest of us.



One week he scared me, though I hate to admit it, and his threat of getting me on my way home from school forced me to walk an unpredictable, very roundabout, long way home. I did that for months, telling no one. It seemed to work and eventually he gave up and found a new victim.


When I was about 9 years old, I was sitting at home looking out the window and saw the wide back garage door fly open, up into the air, then one of my brother's cars came out into the yard and quickly back through the broken door. WHAT WAS THAT?!



Yelling to my brothers, they ran out of the house and down the alley, catching the thief and his buddies in the car, which was 1/2 block away. Yes, it was that bully. Wow, did he look small next to my brothers, who were 16 and 17. That was the last I ever saw the bully in school. The cops were called and he went to jail. I never did tell my brothers or my mom that I knew anything about him. But, months later my mom told me, "If anyone ever picks on you, you tell your brothers. They will take care of it." Oh, sure, my brothers who tormented me all my life...right, Mom. Looking back, I do believe my younger brother would have, and I wish I had thought of it at the time.




The only other bully I can recall was my gym teacher, again, being fat made me an easy target. I hated gym class because of him, and having to undress around other girls. Once, when I could NOT jump over the (I just spent 15 minutes of my life I'll never get back, Google searching that gym thingy for a name---closest I can get is it looked like an Olympic high jump bar, but makes me feel good that I couldn't find it under gym class--have they removed that?) pole. Mr. Gimmer was so mad he lowered until it touched the floor and sure enough I tripped over it. Now, in my defense, he was telling us to jump it with a scissor motion in our legs and my legs just didn't scissor, I mean, OF COURSE I could have jumped over it so low, but I was trying to do it the way I was told, the way it looked like everyone else easily did it. Now, a beautiful thing happened that day.



One of the little boys in that class had a crush on me and he suddenly couldn't jump the bar either. After Mr. Gimmer punished me by making me sit against the wall, David also could not get over the bar when it was lying smacko on the floor. Mr. Gimmer (former military, which he told us often) was red faced, neck-vein popping FURIOUS and made David sit next to me. This was a treat for David and I felt a twinge of happy that David showed support.



When I traveled 2,500 miles home from Seattle to visit my mom and Aunt Vi, I drove over by Aunt Vi's childhood house that her dad built and sat in the car looking at it. It was less than a block over from the school (yes, Aunt Vi and I went to the SAME elementary school) and out of the rear view mirror---there he was: Mr. Gimmer. He looked much like I remembered him. I decided to stroll for a closer look.



He had that same (well, same type) whistle between his lips and kids were running around the block just like we used to have to do. There I was, er, I mean, there at the end, after all the other kids had headed into the building and Gimmer was out of sight, was a fat boy, huffing, sweating, about to collapse, all alone. I became furious. This was my moment. I was meant to see that and have it out with Mr. Gimmer. I would tell him that being an adult and able to make my own healthy food choices along with exercising by participating in activities of my choice that I have fun doing was how I lost weight and became healthy! I just stood and watched. I never confronted Mr. Gimmer. I wish I had.

If there were bullies in Jr. High, I didn't know them. Aunt Vi used to pick me up in her car sometimes, but I skipped so many classes--who knows? By high school I was in with the Drama kids, and they were cool. Then there were speech meets, more cool kids, smart kids---if there were any bullies, I didn't know them.

My partner was born with eczema and in school the kids called her a leper. She was beaten up so often that her parents finally put her in a Friend's School. She was a slight child and easy prey. She cries when she remembers.

It shocks me how parents and teachers allow bullies to 'get away with it' nowadays. Who ARE these bullies? Are children taught early that a bully is a small, scared, ugly person? Are they taught that a bully is MADE, not born that way? The bullies I knew started young---can't a teach catch that? Is it just too much trouble because we adults know the problem is at the bullie's home? I have so few answers to this issue. To say, "It gets better," or "it will pass," to think, "we all go through it," or "just a kid phase of life," these are cop-outs in my book.

"Research shows children who stand up to bullies do better in life," really? We had a place by my schools called, "Beechwood Circle," a street filled with 'rich people homes' (I just googled it because all I could remember was beach wood and Ft. Wayne is not known for any beach...those mansions I remember? I can AFFORD them RIGHT NOW. Mind-blowing.) and it had a hidden area where kids were called out to fight. One day a boy who was called out was scared to death. I saw this happening and I told him I would go fight the no-good dirt bags. (I have no idea what I was thinking other than I always saw myself as invincible and mighty. Besides, I knew the family the bully came from, about 5 bully brothers, all smaller in weight than me. Maybe I just couldn't take it anymore.) So the school was on alert. As the appointed time grew nearer, I began to doubt that it had been a good idea, but it was too late to turn back. Off we went, a group on my side that grew smaller the closer we got to the destination. I arrived. We waited, The bully showed up, yelled a few cuss words and left. He was afraid to even come near me. End of story. Sort of.

One small boy did bring his bully to my yard and I wrestled him down, threw him around until the bully left, defeated. Sounds so bizarre now. In my mind I still thought: soon I would be a man. Oh, well. But, the idea that my 'standing up to' bullies made me a better person is just hogwash. The person who runs in front of a bus to save another does not become in some way better. They were just more able than anyone else around during that given situation to 'stand up.'

Many of us recall the Andy Griffith TV show episode where Opie finally fights back his bully. He hits him and the bully leaves Opie alone. 1. That bully will just find another kid to steal milk money from and 2. Opie learns that hitting and retaliation solves problems.

One last thought: Where are kids supposed to turn for help? Oh, sure, "Tell an adult." Right, like a gay kid has words to tell his religious parents that he is gay. Like a girl is going to tell an adult she is called a 'lesbo,' when she think she probably is. Then the kid has to hear her parents verbally destroy the bully because of such a HORRIBLE thing to be accused of. Yeah, that's fun.
And TEACHERS? Some schools won't allow "Sara Has Two Daddies" in their school library, what teacher wants to step into that?! And (SPOILER ALERT) many teachers are LGBT (Lesbian, Gay, Bisexual, Transgender) themselves, well closeted and not about to appear as an ally to that "choice."

Maybe, I HOPE, that thanks to the Internet, kids will have a place to go to ask for help. My partner would have LOVED to communicate with another kid who had a disease whom she could relate to. I would have loved to email a kid who shared my darkest thoughts. Together, maybe we wouldn't feel alone with out struggles. Feeling alone is the worst part of being bullied.

As adults, we must all do what we can. Unfortunately, quite a few adults hate in others what bullies hate in those they bully. So, remember to work on that too. I'm going to look into some ideas, to help. Here is just one site I found. Please add any ideas you have. This can't be solved alone.

Cohen, Vieira, Anderson, Talking MS and Betty White

While I have always been fond on Anderson Cooper as a reporter who acts like a dignified, qualified, reporter, I was reticent about his hosting of a "talk show." But, I checked it out yesterday, and his guests made the show. (Meaning I hope Cooper sticks to reporting, but, oh well.)

Richard Cohen, who has had MS for many years (is legally blind, needs a cane) and lived through aggressive colon cancer, is my favorite MS spokesperson. A reluctant spokesperson, but being a writer by craft, it has allowed him to pen a couple fantastic books* about living with chronic illness. (*Blindsided and Strong at the Broken Places)

It was their usual interview as a couple, he and his TV celebrity-wife, Meredith Viera, telling the same stories I've heard a dozen times before. What I love about him is the fact that he is not selling anything. He is telling it straight about his MS. "...I am better than many."

That's right, if you see somebody walking and talking on a TV show I guarantee you, "they are better than many." As opposed to Montel Williams and his sob story, Cohen has spent time with many people living with chronic illness and he grew up with his father who also has MS. He has been a newspaper reporter for many years, and he has educated himself about MS.

His greatest involvement is with the Harvard NeuroDiscovery Center, where he devotes time as a council member. I had never heard of that and after reading about it, I too will help as I can. Their research is cutting edge and will help Huntington's, Alzheimer's and other diseases of the brain.

In the audience, two women asked questions. One of those women is a Face book friend of mine, so that was fun to see. In fact she told me about the show, or I would have missed it. (I would have told you sooner, had I known.) Bothersome was, once again, the "My MS went straight downhill." Uh, NO, it didn't or you would be bedridden right now. I read it on Face book every day, people confusing "progressing" with "progressive MS" and thereby confusing people who know little about MS. (And apparently confusing themselves!) One woman had been diagnosed just 3 years ago, and though she described terrible symptoms (none I haven't long ago gone through), there she stood, speaking clearly---what must people watching think? They think, hey, I have $20 to give to charity, I chose Lupus, people die from THAT! MS looks doable.

Sigh, and so again we shoot ourselves in the foot and wonder why we can't get more money for MS, why we can't find a cure for this debilitating disease. Just, sigh.

THEN, Cooper had Betty White on! What's not to love? Betty White and Richard Cohen, two great love stories. Richard and Meredith, their terrific kids, and Betty and Allen Ludden (he died in 1981 at age 63; they were married 18 years, he was a widower when they met) "...the love of my life." I have heard her say that many, many times. The best comedians have some deep pain, but when you listen to her speak, you just know he is with her always. Betty once said in an interview about Ludden's death from stomach cancer and how she carried on without him, "You just put one foot in front of the other and live moment to moment."

A motto both Cohen and White live by with great success.

MS Discussion on Anderson Cooper TV Show

Check your local listings, today on "Anderson,"on NBC (opposite Dr. Oz here), there will be guests Richard Cohen and his wife Meredith, talking about multiple sclerosis.

This will be one not to miss!

Twisted Seattle Front Line Culture--Truth Will Reveal

A big scandal brewing in Seattle over call center employees putting other's money on THEIR own accounts. With all the humility I can muster, let me say, if my long worked on book were ready for press (ready for digital?) tonight---it would be a best seller. THIS sick, twisted culture at the City of Seattle call center/front line employees, is what my story is all about.

Many times I have asked myself, "Why bother? No one will read this old story about sexual harassment and the culture it thrived in." Now...I am emboldened that this is relevant, timely, and the citizens of Seattle and other cities will want to KNOW. Employers should want to know and understand how to PREVENT such a culture.

Can you imagine a work place where a person does NOT ONE THING for at least a solid YEAR, and nobody knows or cares. Too much trouble, too much work for THEM.

Every time I read what I've written, I think the same thing: This is unbelievable.
(And that is why it is so important to add the court documents I have. The one-finger, MS writer, continues.)

STOP FIGHTING YOUR MS. Be a Lover.

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

WORLD AIDS DAY. Take a Moment.

Take a moment today to remember all of the people you knew who died from AIDS. Do you remember the first time you heard that word? AIDS.

It was the gay disease and many just shrugged their shoulders with, "...made your bed now lie in it," until you heard of a child who had it, then heterosexuals, babies, people all over the world---no one was safe. Another ugly blemish on our history, when we turned away from those who were suffering, those who needed our compassion. I'll never forget those first years. Horrible.

Take a moment.