Sunday, September 26, 2010

I Am a Renegade

With the pretentious assumption that I have something worth saying, I have started a separate site just for discussing life with MS.

There are many blogs, websites and forums out there that deal with Multiple Sclerosis. I have found most of them, while earnest and well intentioned, are not for me. Forums where people sign their names with illustrations of bunnies and rainbows are not for me. Blogs where people say delusional things like “I have MS but it doesn’t have me” are not for me. Websites that extol individuals who do things like climb Mt. Everest despite having MS are not for me. Because that is not the experience of MS that most of us have. Web sites that call a spade a spade are for me. So that is what mine will be.

I hope you will stop by and even more I hope you will contribute. I always welcome comments. I will also welcome guest posters; e-mail me with your thoughts or ideas for a post. And I have a separate page for our dedicated, often underappreciated, caregivers, where they can describe their journey along this rough road.

Having MS absolutely sucks. Sure, your attitude towards life is a choice. But I cannot pretend that Multiple Sclerosis has not stolen my career, my independence and my future. I hate it with every fiber of my being and I will not go quietly. That is why I am writing MS Renegade.




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Tuesday, September 21, 2010

It WAS My Birthday!

Completely forgot my e-mail subscribers can't see embedded videos!! Sorry about that! So here is a do-over, because this is an awesome version of The Birthday Song:

http://www.youtube.com/watch?v=MjF1bG5LUcs

Just look at those people!! Can you even imagine so many coming out just to see you!?! I wonder if you ever get used to it?

And here is the embedded version, in case you missed that:



I had a super birthday, thanks to my children and my amazing, generous, loving friends. My daughter brought me breakfast and we sat in bed watching the Today Show and generally laughing at everything. I received good wish after good wish all day long, on the phone, in the mail, in person and on Facebook. And tonight had dinner with half the kids, their Significant Others (who I love) and my beloved grandson, who is a total character. He sat next to me and gallantly picked up my napkin every time I dropped it, which was pretty often due to lack of feeling in my hands. Finally he said, very seriously, "If you drop it again, I'm not picking it up." Alrighty then.

Thank you all so, so much!!

_______________________

Last chance for a Giveaway on my Bookworm page, The Shore Bookworm. Leave a comment by midnight Eastern Time tonight for a chance to win "Past Caring" by Robert Goddard. While you're at it, sign up to get The Shore Bookworm delivered to directly to you. I am doing reviews and recommendations of great books, old and new, children's books and adult's books and generally commenting on the magic of reading. Come join the fun!

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Monday, September 20, 2010

They Say It's Your Birthday!

Here are Sir Paul and the people of Moscow wishing me a happy birthday. They are SO thoughtful!!



Sigh. Even after all these years, gotta love Macca!!


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Friday, September 17, 2010

Stormy Weather

Wonderful Support

I have to say I am so touched by the response to my previous post about being crucified lambasted mildly criticized on a blogging forum. I am the first one to admit I am a card carrying histrionic over-reactor. So sue me. I maintain hyperbole is one of life’s great pleasures and keeps things interesting.

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At any rate, I may have over-reacted a teeny, tiny bit, but I still stand by Operation Nice, because nice is a good thing to be. You can see that in all the lovely comments left all the nice people I am surrounded by.

Big Grin Smilie Pictures, Images and Photos

The Cat

I have always loved animals and was not allowed to have a pet as a child, which made them all the more attractive. Since I have had my own household, cats have been a constant. Dogs frequent, but cats constant. I truly love cats and I could be a crazy cat lady in a heartbeat, although my daughter maintains I already am a crazy cat lady. Harrumph. I could easily have 20 cats if I didn’t control myself and limit it to my current two. The ASPCA had a sign outside this week that said “KITTENS” and I almost crashed the car.

It is a well established fact, I am a cat person.

So I am humbled to say…almost whisper…one of my cats is DRIVING ME OUT OF MY COTTON PICKING MIND!!!

Technically, she is not mine, but my oldest son’s. He and a previous girlfriend adopted her and the girlfriend thought it would be funny to call her Perri, ‘little dog’ in Spanish. Hardy har har. Or maybe it was his idea and he said it was her's so I wouldn’t think he was an idiot. Whatever. Girlfriend goes, cat stays, new girlfriend (subsequently wife) comes, cat goes. It happened more subtly than that, of course, with plaintive comments about his life as a busy lawyer, cat is lonely, no fair to the cat, poor cat, sad cat, cat feels abandoned, cat needs therapy…ok, ok, I’ll take the freaking cat!

My daughter picked her up in Jersey City on her way home from Manhattan College at the end of the school year five years ago. The fact that Perri literally caterwauled all the way home to the Jersey Shore was our first clue that this tiny little tuxedo was more than she seemed.

Much more. More everything. More jumping on things. More knocking things over. More breaking things. More puking from eating too fast. More meowing (a piercing, ear splitting meow) to go out, which I do not allow. More always trying to get out. More clawing at the screens. More unfriendly. More all over teeth-clenching aggravation than any cat I have ever had. Although she is very pretty and silky. End of redeeming qualities.

Through a quirk of coloring, she always looks as though she has a frowny face.



And coincidentally, she is a total pill. Does not cuddle, does not like to be petted, but loves getting in the way.




I have not slept through the night, or lying down, since I broke my shoulder two years ago. I doze for an hour or two, then I am awake for another few hours, then doze again. Last night, for the first time in I don’t know how long, I was still sleeping at 2:30 a.m. When I was woken up by a cat screaming. A cat outside in the storm. A cat that sounded suspiciously like…my cat.

I stumbled to the back door, barely made it down the steps, opened the door and there was nothing there. Hmmm. I must have been dreaming. Up the stairs, back into bed, pull up the covers and cat screaming starts again. F****k.

Stagger back through the house, down the stairs, pull open the door expecting a little cat to slide in at my feet and I find myself nose to nose with this:



I screamed! She screamed! Thunder and lightning crashed!

Then she dropped to the ground and sauntered in as though to say “What the freak took you so long?” She proceeded to jump up on the kitchen counter and knock over a plant. I never got back to sleep for the night.

Oh, and here is my screen today:



I am starting to intensely somewhat dislike her. Don't let her know!!




I think she is watching me.

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Sunday, September 12, 2010

Operation Nice

I am no saint by any stretch of the imagination. But I am generally nice. It doesn’t take much to be nice. Even if you, like me, frequently despair for the future of the human race due to all around ignorance and obtuseness, I find that in one-on-one situations, I am far more inclined to be nice than not.

This is why I was absolutely gutted when two strangers, without any provocation, recently criticized me on a blogging site. I hadn’t asked for a critique, but I sure enough got one. And it wasn’t pretty. It actually felt mean spirited to me, and senseless. It made me cry. Because any feedback I have ever gotten for my blog has been positive. My blog, and its readers, have been among the only consistently good things in my life over the past two and a half years. I’ve lost jobs, I’ve had multiple unsuccessful surgeries on my broken shoulder, I have been in constant pain and Multiple Sclerosis has progressed, but my readers have held me up time and again with endless encouragement and love.

To have two strangers tell me I sounded annoying and boring was crushing. It wasn’t asked for. It wasn’t called for. And it wasn’t very nice.

I have read some blogs that were practically illiterate they were so bad. I have seen people write some really stupid things. But I would never tell the writers that, ever. The fact that they make the attempt to get out there is a brave act by itself. Who am I to criticize them? It is a classic case of having nothing good to say, I will say nothing at all. Why would I deliberately hurt someone in that way?

While still smarting from the unsolicited disparagement (ok, obsessing; happy?!?), I accidentally came across a blog created by a girl right here in New Jersey. It is called Operation Nice, subtitled Encouraging Individuals to be Proactively Nice. Right, an accident. Once again, when I am at a low point, I have had something put in my path that reminds me there is the potential for much goodness in the world.

Melissa’s blog contains stories of people being extraordinarily nice, not simply holding the door for someone. Her sidebars are loaded with tips and ideas for being nice, including this one: “Paying someone a compliment can actually decrease your level of anxiety.” Her philosophy is a simple one. We improve the world one kind encounter at a time.

I will never tell someone “the whiny intro here certainly doesn't do anything to inspire anyone to take an interest in your blog”. Or that their blog evoked “shrugs” after reading “a few sentences”. There is absolutely nothing to be gained in saying that to someone. I would rather be part of Operation Nice.




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Monday, September 6, 2010

Inspiration

While I love nothing more than a rip roaring pity party, I find God puts people in my path who are so strong and cheerful in the face of adversity that I am forced to be hopeful and inspired. I hate that. It is so much more fun to be miserable and self-pitying. But there you have it. These people are quietly resolute in their capacity for enthusiasm and good nature and there is no escaping their spirit of faith and their resiliency.

Live and In Person

When I started graduate school I was lucky to have several wonderful professors, two of whom have become friends. One is a smart, funny woman with a wry sense of humor, someone who is referenced in textbooks in her field (!) and has been a great, encouraging influence.

The other is the teacher of the first graduate class I had. Within minutes of class starting, I was entranced by this young woman, young enough to be my daughter, who is a walking fountain of knowledge. Literally. She is an intellectual sponge who has a Ph.D. and at least two Master’s Degrees. She may have even obtained another one while I was typing this. She is sweet and funny and celebrates geekdom, so we totally hit it off.

What you don’t know about Rebecca initially, however, is that she is a cancer survivor. She has been very, very sick, yet has continued teaching in a matter of fact way, discreet and unassuming. If it had been me, I would have been teaching with a box of tissues in my hand, weeping copious, attention getting tears while moaning “Why me?!”. Not Rebecca. She has just gotten on with it. Not only that, she also gives back in ways that most people are never aware of.

One of Rebecca’s quiet passions has been teaching those incarcerated in the prison system. She has taught over 70 courses since 1998 to both men and women inmates in minimum to maximum security prisons. In addition, Rebecca has taught or directed over 1000 hours of workshops and continuing ed classes. Most recently she completed a three year, $1.8 million program that served over 500 participants. While she would never describe it this way, this endeavor has involved enormous investments of time and energy, long drives to the prisons and emotionally draining experiences. She has done this work even while sick, as she is of the firm belief that education will help at least somewhat in reducing recidivism and getting people back into the real world.

But this summer she gave back in one unique way that actually made the newspaper. Rebecca had long hair. Very, very, very long hair. Like over three feet long. She wore it in a bun most of the time so you didn’t realize just how long it was. But it was Rapunzel-long.



In August, Rebecca climbed into a salon chair and had it cut to shoulder length. What was cut was donated to Locks of Love, an organization that makes wigs for cancer patients who have lost their hair to chemo. They estimated that they might even be able to make two wigs out of what Rebecca generously donated. And she looks absolutely fabulous.



You're the best, Rebecca!

Another person who gives me much to consider when I view life is someone I know through church. She is a very private person, so I will not go into details, but that is part of what I admire about her, the fact that she is so modest and down to earth. She is a tireless worker in every aspect of her life, doing things that require such dedication it overwhelms me just thinking about it. No matter what she is dealing with she never has lost her sense of humor. Best of all, she laughs at my jokes.

There are many of us online writing blogs about living with Multiple Sclerosis, but none does it with as much panache as my friend Marc. Having won the Crap Lottery prize of Primary Progressive MS, Marc is a model of an erudite, polished, informative but friendly blog writer. His physical limitations have not stopped him from using his prodigious artistic talents of photography and film making, which he also shares on his blog. For Marc, just getting up every day is a triumph of will over fate. Make no mistake, he is angry at what he has experienced, but he has turned it into a statement: Screw you, disease, I am living to the fullest. He is the Wheelchair Kamikaze.


Then There are People I Only Know Virtually

Becky is a therapist working in the western United States. On her blog, she expresses herself in a way that makes it clear she is a warm and humane practitioner, full of enthusiasm for her work and compassion for her clients.

Becky also has retinitis pigmentosa, which has stolen her eyesight but not her passion for life. She bikes with her husband, she is a public speaker, she RUNS!! Oy, I barely like walking from room to room, never mind running outside. And I can see!

Becky’s companion through many of her activities (besides her uber-spouse, Steve) is her guide dog, Cricket. In addition to being uplifting, Becky’s blog is a great tutorial about living with and dealing with a guide dog. One of her primary messages is about the resiliency of the human spirit and Becky invites people to send in their stories. These are both sobering and moving, messages of hope and the will to thrive in the face of tragedy and obstacles. You can read Becky’s encouraging messages at Crusin’ With Cricket.

Some other inspiring bloggers I have recently encountered:

Daily Spirit

Caregivingly Yours

They are all around us, these quiet heroes. We are often unaware of them because they do not broadcast themselves. They model powerful lessons for me with their everyday lives.

If you have any you would like to add, please leave a comment!


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Sunday, September 5, 2010

Fifty Seven Years Ago Today

On September 5, 1953 my parents were married in St. Elizabeth's Church in Manhattan, in Washington Heights, the neighborhood where they had grown up. It was blazingly hot that day, there was a heat wave in New York City at the time and, of course, no one had air conditioning. They were 19 and 21, younger than all my own children are now. Impossibly young.



They are still together after all these years. Not quite a fairy tale ending, but still together.

In the picture below, from left to right, are my beloved, handsome grandfather, who died in 1999 at 95, my aunt who was 6 at the time and is still rollicking around, my adored grandmother, who died in 2000 at 96, my mother, my father, my loving aunt who is still hale and hearty, my uncle who died in 1998, and my dear, generous aunt, still with us, who taught me how to quilt. I really cherish this picture.



Fifty seven years is a long time. Only a little longer than 56, which is how old I will be in two weeks, as I came along a year later.



Me, the icing on the cake.

Although I suppose my two brothers and my sister might be taken into consideration too.


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Friday, September 3, 2010

September Give Away

September is National Sewing Month, created to honor and recognize the importance of home sewing.

I love to sew. I was lucky enough to have two aunts who taught me how. My Aunt Joan did it as a hobby, but the other, my beloved Aunt Dottie, was a brilliant seamstress and designer. My cousins were in ballet recitals every year and Aunt Dottie made all their costumes, gowns really. I was enthralled by her basement workplace, where dozens of dresses in gorgeous, lush fabrics hung enticingly. My Aunt Joan taught me how to quilt but Aunt Dottie taught me how to piece a pattern together and what the difference was between sloppy, basting type stitches and even, precise stitches that were the only ones acceptable. Spending weeks with her in the summers, I made Barbie clothes stitched by hand with the fabric scraps left from my cousin's costumes. That time, those lessons, were a lasting gift.

Today when I make something, I am always thrilled by the process of putting together bits of fabric like a puzzle and having a finished product emerge. Home Ec is so scorned in school, but I think everyone should learn at least the rudiments of sewing. It is a skill that will always serve you well.

In honor of National Sewing Month, I am giving away a little needle case I made from felt in the shape of a thatched Irish cottage. Tiny french knots represent flowers alongside the front path and a minuscule glass bead stands in as a door knob. Inside are two pages to hold needles. Whether you are a regular sewer or never sew anything more than a button, this is a sweet little case to store your needles in.







Everyone who leaves a comment in the month of September will be entered. I will chose one name on September 30 as the winner.

So, leave a comment, good luck and thanks for reading!

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Wednesday, September 1, 2010