On The View: Richard Cohen MS Realist and Best Spokesperson

The best spokesperson for multiple sclerosis is Richard Cohen. Yesterday he appeared on the TV show The View, with his wife Meredith Vieira. I am a big fan of his books about living with a chronic illness: "Blindsided: Lifting a Life Above Illness: A Reluctant Memoir," and "Strong at the Broken Places," which I have been greatly inspired by. (under label MS, you can read more about that from my blog)

When I become frustrated with people slobbering over Montel Williams as a "great spokesperson for MS," I calm myself by thinking about Richard Cohen.

Richard Cohen is the real deal. He has lived with MS over 40 years. He said yesterday that people seem to want to ignore the "progressive" nature of MS. He was unhappy with the fact that more is spent in the U.S. on our 'war' in Pakistan in 2-1/2 months than for illness in a year.
He noted how poorly the NIH (National Institutes of Health) is funded, how stem cell help for MS is far away. Maybe I like him so much because he agrees with me on this point: There have been no significant advances towards curing MS.

Many are afraid to speak the truth about MS. Many are afraid to hear it. Many doctors have lied to me because it made them feel better than if they had to speak the truth. Many people with MS latch onto the latest cure-craze (FDA be damned! I feel great now!) until it fails them. But if you live with MS long enough you will, with RARE exception, finally accept your diagnosis: You have MS, a chronic, progressive, disease without a cure.

Accepting those facts about MS, has allowed me to keep moving on with my life, allowed me to plan for the future, and allowed me to prepare my loved ones for what lies ahead. I don't waste time chasing rainbows for that pot of cure at the end. Like Richard, I have a LIFE to live!

Cane by his side, he still maneuvers the city streets and subways, while being legally blind. He also is a cancer survivor and I can relate to that as well. On Face book, so much depression over people's diagnosis of MS...I offer what advice I can, lend an ear, (( ))s, but I feel SOMEBODY needs to give them a reality check. MS may be only one health issue you will need to fight in your young life! I thought when I got MS, "Well, this will be my issue." I never dreamed ovarian cancer would be dropped on me within 5 years.

Richard Cohen survived his cancer as he does his MS, with a glorious sense of humor, a determination to keep a purpose beyond making money from his illness (You will NEVER find him selling blenders or giving lectures on how to 'beat MS.'), and his keen interest in learning about others. I always get the feeling that if he could, he would never speak about his MS. But, that is not an option for those who live with it.

A cane is almost like having a dog by your side, strangers use it to start a conversation, especially if you look, by all other standards, "good." Once you are using a wheel chair or power chair, here come the questions. If he were not married to a TV celebrity wife, he probably would be just another guy with MS. The ones we never hear about. The ones who have studied their disease and get on with living until they die. Like me, like all of us, we think we will be the ones who don't progress, who live long enough for a cure, who will NOT die WITH MS. Now, in 2011, I don't think that way anymore. I think I will indeed die with MS. But, I agree with Cohen on this thought of his too: " You know on every level that it is a one-way trip. You're never going to cross back over. I deny the certainty of possible outcomes. It really frees you up." Or as I have said many times, I think of my MS always and never.

If you want to be inspired, read his books and look for the current AARP magazine cover story about this amazing man who just happens to have MS.

Magazine Love

Yesterday I picked up some magazines to read, from our library at my retirement community. I got Archaeology Magazine, Neurology Today, and W.

That's right, the average age here is 85. If you have never spent much time around our older generation, then you might be surprised how youth-FULL they are! I HAVE spent many years around people much older than I. Few surprises for me, but I must say that I was surprised to see that the W was subscribed to by our oldest resident. (100 years old, she LOOKS 68)

OH! And I got to read Architectural Digest with Ellen and Portia on the cover. If I win the lotto...I will subscribe to all these magazines!! (Oh, I found that I can get Neurology Today free, since I have MS, but also found it is one big Big Pharma ad machine. Well, I DO want them to continue R&D, research and development.)

I love magazines. Do you have favorites?

Big Dog, Billy Club, and Evening Excitement

See that big dog? I'll call her Cassie. Cassie moved into my retirement home a few months ago. She is old and, er, overweight. Her owner says she has Rottweiler in her; I say she ATE a rottweiler, either way---a massive DOG. Mostly Cassie sits or goes flat. Sweetest dog I ever saw.

During a birthday party at her apt., Cassie knew she should greet me and I was sticking my hand out, but it was obvious she just wanted to stay, er, down. Nonetheless, Cassie shifted her massive body enough to sit up and in doing so her head pushed forward far enough to reach under my hand for a pat, before she slumped back down, smiling all the way.

One evening about a week ago I was hanging out in our lobby when the front desk lady got a frantic call that there was violent sounding yelling coming from the apt. next to Cassie's. The front desk lady called her macho husband on cell, but didn't get him right away. There had been trouble in the apt. before and apparently this was nothing new. "I'm afraid to go down there without my husband and I can't reach him."

Since I am disabled and in a wheelchair, of course I quickly said, "I'll go with you!" And I saw a billy club on the chair next to hers so I grabbed it before heading out. She talked as we went, and the yeller had done this in past, but settled down. When we arrived, the owner of Cassie (I'll call her Beth) was in the hall with Cassie, who had her tongue out and was huffing like she just ran a marathon. They had heard the commotion too.

So there we were: A 68 year old receptionist with a cell phone, a woman in a wheelchair with a billy club, and a woman with a dog bigger than all of us, who was huffing her heart out and looking toward the apt. door where the yelling had come from. I did used to be a security guard and I felt completely in control, well, until I noticed the receptionist had disappeared into the apt. of the yeller and shut the door!

Beth started talking and I put my finger to my lips, to indicate "shsss." When I did that, Cassie closed her mouth and held her breath, her eyes directed straight to the apt. door in question. Total silence.

Then the door opened, receptionist came out, and Cassie simultaneously let out her breath as she slumped in a fast PLUMP to the floor. I almost started laughing. Cassie knew what we were up to and she gave it her all.

The yelling man was sitting quietly in the dark watching TV. Macho husband came in from having walked his little dog and after I went home he got into it with the yeller, police were called and situation was dealt with.

It is at those times I think of, of course, YouTube, and if only I had taped we motley crew of four.

Good times.

(And, yes, I got in the doghouse when I returned home. Drat.)

After Thanksgiving: Never Seen TV Like This

Went to dining room for the BLOW-OUT meal at my retirement home. Joe was there, sat next to me and in less than a minute the server moved my salad and my partner's salad to next table, rearranged the chairs, and I never looked at him. Partner and I had great time staring into each other's eyes and basically acting like it was our first date.

The food was ok. The pumpkin pie had NO WHIPPED CREAM, sacrilege. The time just flew by and while I had planned to go around saying "Hi" to all my friends here, almost all were gone!

Then home for a movie, like Thanksgivings of olden days---and look what we saw on TV!!! Good Grief! That was SUPPOSED to be Gunsmoke! Freaky.

We talked instead. (Home entertainment old school.) Partner 'thinks' in images. I think in words. I tell her there is always 'talking' in my head. She rolls her eyes. We both agree the other has a hellish mind.

In evening we watched "Super 8." WOW, great movie by J.J Abrams and Spielberg. Just, wow. It made for much more discussion about what we would have been like if we had been friends as kids. She the film director and me the LEAD actress. I told her I would give her as many takes as she wanted, no problem, but, I have little tolerance for my fellow actors who are not prepared. Just FYI.

This morning, "Black Friday," I am a bit depressed. Looking online at my favorite store, "The Vermont Country Store" I find that with 15% off and free shipping---still no gifts I can afford. Buggers! I watch the crowds rushing in store doors, wonder why they look so fat...and with all our unemployed---WHO ARE THESE PEOPLE who must have things? I hate to shop. I hate to spend money. I love giving gifts. I have no artist talents besides acting, and my MS has canned that since my 'tool' is my body. Gruff.

Had to explain "Black Friday" to my Kenyan caregiver. I ended with, "And THAT is why we wanted a president from Kenya."

The Perfect Turkey Stuffing

Happy Thanksgiving my readers, peeps, friends, and family! (And your dogs & cats!)

Shooting Pool with Multiple Sclerosis Excuses

Seriously? He said that to me last evening? "Stop making excuses! I can't do this, I can't do that, because I can't stand. YOU DON'T EVEN TRY!"

Me: "That's what you think of me, isn't it?! That I just sit here and WON'T try to do more." (My voice is now raised to almost match his angry, loud, tone.)

"YESSS," he snarls, as he slams a pool stick on the pool table.

Last evening after a pleasant dinner, my friend here, Mary, asked me if I wanted to play the board game 'Sequence' with her. Joe and I had wondered if there might be a bridge game, but no players, so I nodded and asked him if he wanted to play too. He said yes.

The three of us were playing our third game of Sequence, Mary had won one, I had won two, when Joe gets up and moves behind me, shouting, "Come here!" His voice tone was one I had heard before---he was angry about something. I didn't even try to guess what. He has blown up at various people during games and at dinner, during outings, and whenever. Mary said to me, "Is he quitting?"

Without moving to see what he was up to, I answered, "He just wants to make a point to me about something." I hoped if I ignored him, that he would come back and settle down. There was a table of four regulars playing a nice game of pinochle at a table across the room from us. Surely Joe would not make a commotion in front of witnesses. But, he did. So sure of his correctness.

Must tell you--it had been a terrific day up to that point. After my fall earlier this year, my right (good) arm was still on the mend. The visiting physical therapist warned it could take 6 months to feel 'right' again, SIX MONTHS! I rely on that arm for so MUCH! Oh well, steady goes the race and just yesterday morning I was able to do presses again, no pain, no after-pain--YEA!!

So, Joe won't come back to our table, Mary keeps asking me, "Are we stopping?" I finally roll over in my power chair to see what his issue is. He is at the pool table, holding a stick and he has racked the balls. He shoves the entire rack of balls towards with great force (anger) at me. They are inches from my face. (I have no idea at this point WHAT he wants me to do.)

"What do you want me to do, Joe?" He shoves the entire group of balls in the rack away and then back to me. I look at him. "I can't shove that rack up the table, Joe."

At that comment from me he goes ballistic. He throws a ball on the table, removes the rack and slams IT on the table. "You don't even TRRRY!" I pick up the white ball and tell him to rack 'em up. He does. I slid the ball as hard as I can, breaking the group, but clearly not to Joe's liking.
He growls, "OH." "Joe, I can't shoot pool anymore!" "WHHHHY Damn It!?" "Because I can't stand!' (I have covered my MS limitations with him so many times before. I am now FED UP. And for him to pull this stunt with Mary innocently waiting to play her board game...oh yeah, I was mad.)

"You can't stand, You can't stand, (he is using a mocking voice now) how long will you use that as an EXCUSE!?Oh, FORGET IT." He slams his cue stick and some balls on the tables. I turn to leave and he shouts out, "We'll just play Sequence." I turn my power chair around and facing him say, "I'm not playing with someone who insults me like you do." Then I say good-night to Mary and leave.

Poor Mary. I will call her today. I have warned her that Joe can blow up, but he had been so good lately. My bad.

I spent an hour before I went back to my apartment just chatting with other residents, it was fun, nice. But, yeah, hard not to let something like that accusation on my character ruin my day.


Oh, and as YOU can see, I have tried to shoot pool from my chair, can't get the right leverage. No big deal to me. But, I used to enjoy pool and often toss the balls at each other before bridge games. And that photo, Joe, that is from a national magazine for people with multiple sclerosis, and it is there to show people that I never stop trying what might seem impossible. It shows that maybe one can't shoot pool like they once did, but TRY and see what different kind of fun you might have, or what success you might have that will surprise you! In fact, Joe, my entire mission of my blog is to show people with MS, illness, and hardships in life, that giving up should never be an option. Who cares if you fail or fall? Get up and try again, try something you CAN succeed at and have fun---just as you are.

My 'awareness' attempts with you have not helped you, Joe. I feel sorry for you.

MS Head Trauma and Spacetime Parallel Universe

Some things you just can't get out of your mind. After reading about quantum physics, multiverse, time warps, black holes, rifts in time, and Newton's apple falling on Einstein's head, no answer is satisfying my head trauma accident from a summer day in 1967 Indiana.

If you are aware of any of the theories mentioned above, keep them in mind as you read what happened, if you are not aware, then just scratch your head with me, pick your brain, noodle on the facts I'll present.

After my 10th birthday I was allowed to ride my bike alone to the park. The park was "Packard Park" and it was about 10 blocks from my home. On a perfectly normal summer day in Fort Wayne, Indiana, I put on my new yellow windbreaker (with a hood that rolled up and zipped shut to form a collar, plus a side arm pocket where I kept that dime my mother always told me to "keep in case you need to call home in an emergency"--I loved that windbreaker), hopped on my fairly new red Schwinn bike and headed off to the park. This was not my first trip there. It was a terrific park located across from an ice cream shop, a grocery store (Roger's), and it had the perfect basketball court. Usually I walked, bouncing my ball all the way, but not on that day.

I rode up to the one major street on my route. It ran between the ice cream shop, park, and the grocery. There was a gas station on my side of the street and I cut through. The distance between the entrance to the gas station and the curb was just a few feet. It was a quiet morning, no one up and about yet, no kids in the the park. It was still cool, that's why I wore my windbreaker. I got to the streets edge, the curb to my right, and looked both ways back and forth---absolutely nothing and no one as far as my eyes could see, which is very far down an Indiana, flat, city street. Off I went.

The next thing I remember was seeing an old, paint splattered, pick-up truck with a ladder on the side, coming to a stop about the middle of the block where the grocery was. Three high school aged boys were sitting on and jumping down from a yellow Goodwill dumpster at the corner nearest me in the empty grocery parking lot. The boys were shouting, "Stop!" and "Hey! You hit a kid!" Then I saw a thin man jump out of his pick-up on the driver's side, and look back at me.

The next thing I remember is walking next to my bike towards home and a man from the gas station came up to me. "Where are you going?" he asked nicely. "Home," I responded mater-of-factly. "Why don't you come and sit down for a minute, " he said as he gently put his arm on me and guided me inside the gas station where I sat down. The quiet of the morning seemed broken and I could hear sirens getting louder.

One of Ft. Wayne's largest hospitals was a block away and a police car pulled up near the door to the station. I heard the station attendant tell the policemen, "That guy hit her and just kept going. She said she was walking home." Then one of the policemen (and I LOVED policemen) asked me my name, while his buddy was speaking on his walkie talkie. "Diane Standiford. I was going to the park, but I think I should go home." "Will you come with us to the hospital first? Let's go this way." The nice policeman was leading me to his car. I thought, "Wow. I get to ride in a police car!?" Then I saw the face of the painter. He looked so scared. He looked shaken. I felt bad for him. "My bike..." The policeman said, "We'll get your bike. It's okay."

After I got in the car, it was starting to make sense. That painter must have hit me with his truck. But I felt fine. He looked so sad. Then the siren went on. JOY! But, wait, we were only a block from Lutheran Hospital. I pondered why that was necessary, but it sure was fun.

At the hospital the police and doctor types were huddled, while some nurses lifted me to a bed and TOOK MY WINDBREAKER. "I have a dime in there!" (I never saw the windbreaker, they pulled it off from behind.) They were nice enough to give me my dime, which I held tight in my hand...until I had returned home hours later.

They didn't want me to see that jacket because it was drenched in blood. I never saw a drop of blood, but my mom did and I guess it was every where on my backside. I take that back: There was blood spots on my smashed bike and on the curb, or what was left of the curb, my head had taken off a good chunk of cement. After we got home, there was still some caked blood in my hair. My mom was called, surgery to stitch my cut was done, the painter never paid anything, though he offered to. In later years my mom would be criticized for not taking money from him, but she would say that she felt sorry for him. (And I felt the same, except I thought I should have gotten a new bike. Aunt Vi probably bought me one.)

Here is the black hole, parallel universes, spacetime, part: NOBODY saw me or the painter until moments after the impact. I looked both ways, no trees, nothing to block my view, so clear and LONG was the area that there is no way imaginable a pick-up could have been upon me. Since my left side of body didn't even have a scratch, it would seem my bike hit his pick-up, tossing me back.

The gas station attendant saw nothing, yet he told police he had been looking out the window. The three boys saw nothing until a bright yellow jacket on a bright red bike fell down hard as a pick-up passed by. They would report that they never saw me coming and never saw the pick-up approaching, yet they were facing that very direction!

The painter also said he never saw me at all. He was not speeding, in fact, he couldn't have been going very fast, and he reported his speed as "about 20 MPH." (This was the first time since my birth announcement that my name would be in our local newspaper!)

This accident might have been a blip on my life screen had I not started seeing 'stars' whenever the injured part of my head was touched with any force. (Like tumbling in gym class, which a doctor wrote off as my not wanting to go to gym.) A blip, had my leg not moved during a walk home from school around age 11.

And the all-time Blip killer: Multiple sclerosis symptoms non-stop from age 20 through now. (age 54) Once I saw my MRI in 1990 and right under the scar on my head from that 'blip'---well there it was, a huge MS plaque, size of my palm.

Now, here is my question: What was the constant? Me? The teen boys? The gas station man? The painter's pick-up? The ice cream shop? We all saw the ice cream shop. That is about the only thing we all saw from our vantage points. But like the wind, we all felt the same breeze, saw the leaves waving, yet, like the wind, it can't really be seen.

First I thought *I* wasn't there before. Nobody saw me. But then I thought it was the painter, since nobody saw him either. (Oh, and the gas station attendant and teen boys saw each other before the event.) Soooo...the painter and I met in an instant. A moment so brief that it could not even be seen.

Did the universe split for an instant? Is there another Diane who made it to the park? And if so, what made the split? Is it just the fact that so many people were looking right at the split that makes it so questionably? Might these happen often and go 'unnoticed'? I mean, many things happen to us when no one is around. The painter would have said, as we have all heard before, "I never saw her." And I would have been dismissed as a kid who didn't look both ways and a vehicle hit me. End of stories.

But this? Because of this I will continue to read about time warps, spacetime, in relativistic theories and hypothetical meta-universe conversations. Something that can not be explained happened to all of us at the scene that day in Indiana. Something that would turn my life upside down, down, down, forever. (Or, until another split turns me up.)

Sex on Glee. Too Heavy for Teens?

Somebody somewhere (My God, this is how far I've sunk? I don't even know where I hear things from anymore??) was complaining about the sex on the TV show "Glee." Being a commenter on pop culture, I had to watch the show in question.

It was about two teen couples, one heterosexual and one homosexual, who are thinking about having sex for the first time. (We must overlook that these actors are about 25 or more.)
So...I waited and waited for these big, offensive sex scenes. Finally with less than two minutes left of the show, both couples are shown in mostly darkness, in bed, still. End of show.

Now, no teen was upset by this episode, unless they hoped to see more real sex. (Like a kiss!)
But certain uptight, eyes closed, adults had a hissy fit. (I wonder if they actually watched it?)
I have blushed at some scenes I caught on soap operas. Trust me, teens have seen and done much more than "Glee" showed them. RIGHT NOW.

Any adult has the option of watching the show with their kids and then TALKING about it. Might even be a GOOD IDEA. SPOILER ALERT AHEAD

If your child is in school, then they already know more about sex than you think. The more you are uptight about sex, the less they will tell you how much they already know. In the majority of cultures, over the majority of history, a boy becomes a man at 13 and a girl becomes a woman when she begins menstruation. It sickens me how we have infantilized our young people. We do it with sex, money, jobs, responsibility, and life in general. Any adult who believes they are doing their kids a favor are so brainwashed by the media that they can't even see what poor parents they are.

Emphysema Drunk Neighbor with Yorkies: Characters I Have Known

No, this will not end in someone's death. That is where it starts. My neighbor (yes, whose name escapes me...maybe by story's end...) used to walk home from a bar every night. He carried his oxygen tank behind him and he was bent over more each night. Finally he died from emphysema/heart/liver problems.

He had lived with his wife and their small Yorkies. His wife just loved those dogs. I think they had three.

They also had a small garden in the rear of their small yard. They shared extra vegetables with my mom and I used to sneak in from the alley to eat raw rhubarb. My brother used to talk with Mr. over the fence. I heard him ask Mr. if married life was good. I was all ears.

Mr. kept his usual frowny, solemn countenance as he spoke through his thin, nearly white lips. "Marry her if you love her...I suppose." Certainly no rousing confirmation. That made me think how sad a man he always seemed, how I never heard him laugh or saw him smile.

After he died his widow rarely came outside anymore. I wondered about the dogs. It sounded like their bark occasionally, over at the house that sat with its blinds closed. No one went in. No one went out. The yard was not mowed. The garden went to seed and weed.

Finally my great-aunt Vi decided to pay a visit to...I want to say Minnie. She took her partner, Ivah, along, and my mom and I couldn't wait to see what they found. Well, according to them, the house was "an unholy mess," so they took it upon themselves to help her clean it up.

After they carried out some bags of dead dogs and dog feces, I was allowed inside. Aunt Vi was cleaning the floors and walls like a mad woman. I was about 11, and I wondered off to an area that smelled slightly fresh. There was a short hallway and a closed door at the end. I slowly walked to the door and ever so gently opened it.

Inside was a small room. I walked to the only lamp in the room and turned it on. The walls were covered with old, yellowed, newspaper clippings. I peered...they were stories about a circus and a clown. There it was: Mr's name. He was once a clown! I couldn't imagine it!

As I continued looking around I saw a plastic box with a big, red, clown nose in it. And under the small lamp was a small desk covered with tiny, colorful pieces of plastic. It looked like he had been putting together a model car, no, it was a model circus wagon. Then I saw tiny elephants, lions, horses, all on top of the desk, on shelves along the walls, a glue jar and tiny paint brushes. If not for some dust, one would suspect the builder had just stepped out for a minute.

Suddenly his widow was at the door, "Take some if you want. I won't be wanting them." I took a couple animals. Aunt Vi took some of the circus wagons. They were all very brightly colored. I remembered my quiet neighbor after watching the movie "Water for Elephants," last week. The minute I saw those wagons it all came rushing back.

Those clippings wrote about him as if he were a famous clown in his day. Aunt Vi contacted his widow's daughter and the clown's house soon went up for sale. The daughter lived in Florida and the widow starting writing to Aunt Vi---often. Aunt Vi sent me a few of her letters, they would be twenty pages long each! Aunt Vi told me to write to her, so I did, for many months, but never got a reply until one day a letter came from her son (or son-in-law?) telling me that his mother had passed away. He included the funeral card and wrote, "I don't know who you are, but my mother died months ago." I felt like a fool.

My neighbor, the famous clown. You just never know.

Gardens, Candy for Kids, Lovers: Characters I Have Known

Hearing stories lately about what kids did on Halloween, made me think of the Wilsons*. Mr. and Mrs. Wilson, they lived in a perfect little white house at the end of my block. They had a perfect lawn and both liked to tend to their house, yard, and garden.

Their garden was grand for the small plot they had. Many vegetables grew thanks to their loving hands. You couldn't walk by without an offer of a delicious fresh vegetable or fruit.

For Halloween they passed out caramel apples. The scent of cooked caramel hit you before you git their porch. We wouldn't dream of not biting right in. Even after a razor blade scare in the media, neighbors would not hesitate to send their little ones to The Wilson's for a fresh candy apple. My mom always got one too!

Almost every day I walked past their house, both were either working in their yard or sitting, smiling together on their daily-swept porch. They must have been in their seventies. No children of their own, but all the neighborhood kids were certainly theirs!

My mom gasped as she read the newspaper: "Elderly couple die in sleep from gas leak."
Just that quick, The Wilson's were gone. Their furnace or stove killed them.

I walked down to their house. It looked so...quiet. A few weeks later it looked awful. The yard was horribly overgrown, the smell of rotting food was thick in the still air. I have no memory of the yard ever looking mowed again. I only remember it looking like weeds.

When I think of The Wilsons, I will smell candied apples and popcorn balls (I just remembered the popcorn balls!), and a happy couple who grew old together with sweet dreams.

*I can't recall their names.

Old Photos Like Gems or Germs?

One of the many photos in Aunt Vi's "box." Aunt Vi wrote on it, "Age 17, isn't she beautiful?" and "My friend ___"

Should I try and search for relatives of all these people in her many photos? It is amazing to me how little some people care...I found the daughter of one person, sent her about 6 photos...no thank you, no reply, I emailed and all she said was "I got them."

To me, these are like diamonds. Am I just too old?

Is An Apology Too Much to Expect?

Today was election day. I contacted my elections office to be sure MY vote had been counted.
They had sent notices telling me that they would NOT count my votes because my signature "did not match what we have on file..." I was told that yes. indeed, my votes were counted.

I want proof. I want proof of this huge discrepancy in my signature since the fellow I spoke with said they compared to the last time I voted. I want an apology and I want them to admit that they made a mistake.

If I see that it is clearly questionable, then I will immediately apologize to THEM.

And while I'm on red tape and apologies: Did any of you hear an apology from our government about the big deal emergency broadcast test that was to happen today? Nope, as much as I like Gaga, hearing her singing is not apology enough.

The Telephone Man and His Savings Bonds: Characters I Have Known

Andy Rooney's recent passing made me think of this character from my job at Bethlehem Steel.

This man was a telephone repairman. I worked on the company switchboard. No, I can't think of his name right now, but it was an ordinary name for an ordinary looking man with an ordinary life.

Every weekday he would make his rounds, first checking in at his office in the headquarters main building, then looking at any equipment that needed looking at in the phone room, then he plunked himself down on the chair next to my desk. He would sit there for hours. We enjoyed each others company. I'll call him John. John loved to talk about his wife, their dog, and their plans for retirement.

I was 27 at the time and saving for retirement was on my mind even then. He was a wealth of info on how to go about it. He had stayed with same major phone company since he was 25, and his 30th anniversary was coming---he was retiring and they had all their trips planned for years. "I'm taking my wife to all the places in the world that she ever wanted to see! Plus, our house will be paid off next month. It is all about planning, Diane. And for the past 30 years I have been buying U.S savings bonds with every paycheck! Now I am cashing them in!"

He was so happy and I was so happy for him. In fact, as soon as I got my next job with the City of Seattle, I began the deductions for U.S savings bonds out of every paycheck like VERN. His name was Vern! (See how the memory upstairs works.)

The gang at our main Bethlehem office had a small party for him. The day he left I shook his hand. All his hard years of working and saving were about to end and play time awaited! He died a week later of a sudden heart attack.

My savings bonds have already been cashed in and reinvested. But, the bigger lesson Vern taught me was to always look for a balance between what you WILL do in life and what you MUST just do now for no other reason than it would be fun.

Studies have shown an unusual amount of people die soon after retiring from their jobs. I look at such studies and say, "OK, but which came first the chicken or the egg? Maybe they RETIRED because they didn't feel well enough to keep working." But, Vern, he was so happy to start his new life. I'll never forget him.

Andy Rooney had a "minor surgery" a few weeks after he retired and died from complications. I can almost hear his commentary on that one. "The only thing shocking to ME is how all the complications in life don't kill us sooner!"

R.I.P. Andy
R.I.P Vern (Yep, I just remembered his last name.)

Family of Card Players. This is Euchre!

This photo didn't scan well. I hope you can enlarge it. This SCENE was a nightly event of card playing at my great-aunt Violet's house. Let me introduce you:
The lady with red hair (Aunt Vi swore it was dyed, but Jo denied it to, and IN, her coffin. Haha) is Jo a close friend of Beulah's, both friends of Aunt Vi.

Beulah is sitting across from Jo in the pink dress. They always had to play as partners and Aunt Vi often accused them (after she drove them home) of cheating. Beulah was a widow who lived in a huge house. She rented out a room to a man. Neither she nor Jo had any kids that I recall.

Aunt Vi's older brother, Arthur is to the right of Jo. He is turned, looking at my camera. See those thick glasses that make his eyes look so big? Aunt Vi SWORE that she would NEVER wear glasses like that! In her last decades she had to wear the same type of thick lens glasses.

Uncle Arthur's partner is my cousin, Les Evans. Les married my cousin Virginia Boveine who was Art and Vi's older brother's daughter.

Next table: Young woman on the front left is my mom, Roselyn. Mom wasn't crazy about cards, but she played. Mom's partner across from her was cousin Virginia. Aunt Vi is at the front of the table in a colorful dress and her longtime companion, Ivah, is her partner. (I THINK that's Ivah...now I can't quite make it out. See why keeping actual photos is important?)

They were playing Euchre (pronounced You-Cur, cur as in curtain.) We played every night for many years. When I moved away from Indiana, no one had ever heard of it, even now, no one has heard of it. When in Rome...I play bridge now.

Those card tables had so many good memories that at least one is still around, being lovingly kept by a cousin. I can smell them and feel them. Good times.

Broadway, Bagels, Poets, and No ADA Door : Characters I Have Known

Ok, for those who are interested, here is another character from my life. It started in my old neighborhood, Capitol Hill, in Seattle. Cap Hill is the most densely populated neighborhood in Seattle and was once a gay mecca, home of "The Only Gay Mall in America," which I lived next to in the mixed retail building I called home for 16 years. It had a main drag called Broadway, where the bus stops were, along with many store fronts. I liked to go out on Broadway at about 5AM every day of the week. I liked to just hang out there in the cubby holes and stairways of the buildings. (This was years before our mayor pushed the University area druggies to Cap Hill, and it still felt safe.) Noah's New York Bagels opened around 6AM, so I often went there on my scooter to get a 50 cent bagel. The problem was the door, not accessible. So I would push my scooter into it and shove my way in.

Yes, there were usually a few patrons sitting at small tables inside, no they didn't jump up to let me in. Fine, cool, whatever, but when it was raining and 35' outside---not cool. Anyway, one day the new store manager (the cashier and serving line were maybe 24 ft. from the door; they could see me, but chose not to look) told me not to push the door, that I would break it. I countered with, then make it accessible, ADA and all. She said, "I'll be sure to let you in." Right. (Like you have done so many times, er, NEVER, before.)

The next day I rode up, drenched in rain, and this street type person who had a sign I couldn't read and a long, worn, overcoat, no hat, stepped up to open the door for me. Neither of us looked like we had a dollar to our names. (A necessary look if you are a disabled woman alone in the dark on Broadway at 5AM and in fact I only carried enough change, exact change, for a bagel and a mocha that I would get later, back at the Broadway Market--the building I lived in.) Drat! Would he expect a tip?

"Thanks, Man," was always enough and he stood in front of Noah's Bagels for at least a year, always opening the door for me. One day our newspaper told his story: He was a published poet who sold his poems on the street now, having fallen on hard times. I think it said he had overcome addiction and divorce problems, but remained unemployed.

In other words, he was a somebody, though by all appearances just another street beggar nobody---except to a woman in a scooter who couldn't open a bagel store door.

After I read about him, I wanted to buy one of his poems. He never showed up again. The bagel store manager never let me in, even when I banged loudly with my fists on the window, bothering the customers until they had no option but to let me in, and THEY looked at me like *I* was the 'bad guy.' When I complained again to the manager, she just rolled her eyes and I just rolled out, never to return.

When I think of Noah's Bagels, it is not the door, bagels, or nasty mgr., that I recall, but the gentleman poet, who preferred to remain just another man on Broadway.

Blogged Out and Boring Myself

I really feel blogged out. Since my blog began I have told my readers about my childhood, my adulthood, pop culture, basically my take on everything. I have a mistress though---my book, my story, that I am still trying to finish. It consumes most of my days, unless I take a break.

Playing card games used to be my break, watching TV, now it has become Face book and that requires more use of my finger, my book writing finger. Not good. I stopped my blog once, just hit the "delete" button and that was that. Then all Hell broke loose in my liberal world: a woman and black man were running for president of the U.S.---back to blogging.

There was an episode of the TV show House this week where a writer needs a brain aneurysm removed, but she insists on putting it off for her reader's sake. She just HAS to finish the story she is on. Now, when I started this blog I doubted anyone would read or care about my musings, but you surprised me. Now, I too feel a duty to my readers. However, there is a story bigger than this blog to be told.

For those of you who have not heard about 'my story," (I once published a draft on this blog but have since removed it, an thanks to those who gave me feedback.) it is about a true sexual harassment incident at my job with the city of Seattle. I will name names. People will be angry. If I do it right, the story might open some minds and hearts, and of course that is my goal.

Once I was so close to being FINISHED, then I ordered court documents from the trial and wow, learned a lot I never knew or could have imagined---it changed everything and a new story was necessary. So since then (that was around 2008 right before all Hell broke loose with my health) I have over 100 pages of COURT DOCUMENTS (and if you are at all familiar with them---they are a pain in the as*) that I need to edit and incorporated into my story.

Do I ever say, "If only I didn't have MS!" YES! haven't all of us with MS or some health problem said or thought that? Alas, I do, and so my one finger and I will move slowly along until I expire or I forget what I'm writing about.

Well, here we are. I am writing about writing. Interesting as watching a slug take its last breath. Don't want to pull an Andy Rooney and mean good bye, when I say good bye, but soon the time will come. I am boring MYSELF with my musings and that is a bad thing. New blogs are cropping (cropping?) up all the time. I don't have time to even read my daily favorites anymore!

See, how boring was this? I do promise you that any book I get published will NOT be boring. In fact, no matter how often I read my story about my job and the 'incident' it is never boring to me.

Sun is rising, beautiful red, another gorgeous Seattle day. Cheers!

Ellen, Portia, Spago and a Gutsy Fan

Found this on Face book, that girl just walked up to Ellen in front of Spago in California., asked for a picture, and Portia took the photo. Is Ellen a sweetheart or what!? And PORTIA, poor Portia, TV star in her own right, but she is just 'that woman with Ellen." (Not a bad gig. Ha!)

In Greece a mob of tourists ran over to PORTIA, all excited, Portia puffed up, alas, they were screaming, "Where is Ellen?!" Hahahaha

On her show yesterday Ellen looked tired, stiff, as if she may have hurt her back again. I hope she feels better soon. She has really gotten into our hearts.

Stealth MS Symptom Can Prevent Voting

Cast my vote the other day by absentee ballot. There are several important issues I want to vote on. Reeled in a letter from my voter's office. They tell me my vote won't be allowed because my signature doesn't match what they have on file. I have been voting by absentee ballot for a decade, at least.

So, I had to check their boxes, return their request, sign my name again, and I wrote on the side margin that I have multiple sclerosis, my fingers are not working normally, my signature varies from year to year, day to day, hour to hour.

This used to worry me when cashiers used to actually care to check my credit card signature, but no one ever said a word---it rarely looked a thing like my driver's license signature. I first noticed my signature was changing about eight years before my MS diagnosis. Funny, all my life my signature had looked exactly like my mother's! Strange, huh?

Do you think this might be an issue due to how I voted? Raising car tabs to cover bus service is a hot issue around here...should I start using an X? But then I will need two "witnesses." Grrr
Today, MS: 1 Diane: 0