Thanksgiving 2013

If I allow myself, I can have a splendid wallow in the muck of all the tough things I am dealing with.  MS.  Stage 4 cancer.  Severely diminished financial status.  Worst of all, most painful of all, estrangement from people that I love.  People I will always love and miss terribly.

There is a big however, however.  (giggle)  I am surrounded by an incredible, amazing, brilliant aura of love and support that is indefatigable.   This network includes childhood friends from growing up in the Bronx. My beloved cousin Steve, a stable, affectionate presence since I was born.  Classmates ranging from grade school to grad school.   Friends from my days as a young mother and La Leche League leader.  Friends from a lifetime of jobs, notably B. Dalton Books, The Asbury Park Press, teaching childbirth classes at Jersey Shore Medical Center, Healthnet.  Friendships that grew through our children’s friendships.  Friends from church.  Friends who used to be neighbors.   Friends I met through other friends.  Fellow writers.  These are true friends, not acquaintances.  These are people who have cried with me and for me, joined in prayer with me, laughed with me, shared their love and lives and individual gifts with me.  Most importantly, these are people who have never let me forget I am loved.  They bring light and joy to me as effortlessly as you would take a breath.  And when I express amazement and gratitude at their friendship, they express amazement that I am surprised.  It is a funny, continuous circle of “You love me?!?!  But why?!?  You are the one who is wonderful.  No, you are the one who is wonderful!  No, you are the one who is wonderful!”  And on and on.

Make no mistake, I have many, many low moments.  I am no Pollyanna.  Constant pain is overwhelming and can obliterate all sensible thought.  Fear of the unknown, of the future, or of the lack of a future, sneaks up on me, leaving me breathless and sick to my stomach.   Thinking of the losses I’ve experienced can make me bitter and full of self pity.  Animosity from people I love has been astonishing and heartbreaking.  There are many desperately down times and I have to struggle awfully hard to rise up.  Some days I barely make it.  But awareness of the incredible affection and sincerity of the dear ones around me holds me up, keeping me from sinking completely.  I know it sounds corny, and the phrase has been in more than a few song lyrics, but they give me the strength to keep going when there is so much threatening to drag me down.   

It is the dedication of all these remarkable people that gives me the capacity to say I have SO much to be thankful for.  Because I truly do.  I hope all of you reading this have as much to be grateful for as I do.

Happy Thanksgiving!! 

1 Corinthians 13:8

Did you like what you read? Let others know. Thanks!

One Lap of America Gets Going

The race started registration on Friday, moving from South Bend, Indiana to Wisconsin and today in Iowa.

While I sadly am too mentally deficient to still figure out how the whole thing works, it seems like it is a great opportunity to see the country.

Here is the link:

One Lap of America

I know this is a big deal for car enthusiasts, not people like me who barely notice what they’re driving unless it doesn’t go.

But it is also a big deal because of my cousin Steve, one of the official event photographers, displaying the bumper sticker to raise MS awareness.




Go Steve! And thank you!!

MS Fund Raising Walk 2010

Three weeks from today, Sunday, April 18, 2010, friends , family and myself will be taking part in the annual MS Fund Raising Walk. It can be a fun day. There is a party atmosphere, we walk along the boardwalk and the company is great.

But it is an event I would gladly pass up. Because it is an annual reminder of the fact that I have MS and that this incurable disease has devastated my life.

Of course I am not the only one afflicted with MS. The walk is also a sobering reminder that as bad as it is for me, there are others who are even sicker. I can still walk some distances, although I need either a cane or a walker. There are people I know with MS who have lost that ability, so to a certain extent I am lucky. I do need a wheelchair for any length of more than a block or two. I hate it, but at least it allows me to get places.

MS has stolen much from me. It has distorted my relationship with my children, who are often required to be caregivers rather than simply my kids. The same goes for my friends, who are wonderful and generous and solicitous, but I would rather be a plain old friend. It has taken away the ability to do anything spontaneously. I have to always worry, are there stairs, where is the bathroom, will there be someone to help me if I need it? I was just laid off from my job. How much of their decision had to do with the fact that despite being one of their top producers, I was a very expensive employee as far as health insurance goes. It was a self insured company. My health care costs run in the thousands every month. I am a liability to a small business. There are wonderful jobs out there that I am fully qualified for intellectually and professionally. But I can’t travel easily anymore. I can no longer maintain the pace I demanded for myself as a department head. So my hard earned career, which was going nowhere but up, is now in tatters.

I am in pain all the time, either from muscle spasms or from haywire nerves. So I tend to do things less and less. Running an errand is a project. It is a struggle to even get dressed.

The disease progresses incrementally. There is no predicting how far or how fast it will go. Statistics say most people with MS will have their life shortened ‘only’ by about seven years. When the time comes, how much will I want to have seven more years? Or will it be sooner? As immobile as I am, will I develop a pressure ulcer? I am on a powerful and dangerous medication to slow down the progression of the disease. Will I contract an infection that my immune suppressed body will not be able to fight? Will my next stumble and fall (for I am always stumbling and falling) be fatal?

Here is the thing: it is crucial to know the ‘me’ in the preceding paragraphs is EVERYONE with MS.

That is why the MS Walk is so important. The NJ Metro Chapter has an excellent rating as a charity. Almost 86% of the money they raise goes into programs for those of us with MS and into research to find a cure. There have been so many developments to treat MS in the past decade alone. That is thanks to fund raising for research.

Whether or not you live in the New Jersey area, I would love for you to be part of my team. You can be a Virtual Walker, collect donations and never have to set a foot anywhere. Or you can come join us on the Belmar boardwalk. Or you can make a donation to our team. I would be thrilled by any of those. This is the link to my team page:

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13121&team_id=204925

And if all you can do is wish us well and keep us in your prayers, I am incredibly grateful for that as well.

Thank you to those of you who have already made donations and for your beautiful messages of support. I am astonished when someone calls me an inspiration or brave. I'm just me. But thank you for thinking and saying such lovely things.

Thanks to all of you for reading my blog. And thank you for anything you can do to support the MS Walk.

Please leave any comments about your own experiences with the walk or with MS. I would love to hear from you.

The Shamefaced Awards

There is so much incredibly horrible junk out there in the blogging world, it gives us a bad name. There are blogs that are sloppy, boring, inane, profane and some that are borderline illiterate.

When you offer up your blog address, people roll their eyes or, if they are more polite, give a tight little smile and say “Oh, sure, I would love to read your blog” while they are thinking “I would rather have my kidney removed through my nose.”

However, there is some work out there that is simply wonderful. Beautifully written, funny, thought provoking and touching. The good ones usually find each other too, so you can end up spending hours sometimes going from blog to blog, discovering a new voice and a new perspective with each one. It is like browsing in a great big library without leaving your chair.

Most bloggers are very generous as well. Generous enough to share their lives and their thoughts and their talent, but also gracious enough to share their praise. This is my LONG overdue post to describe some of the awards I have been honored with over the past several…um...months. Yes, I said months. That is where the shamefaced part comes in. What I should be getting an award for is Ingrate of the Decade.


AWARD THE FIRST
(what can I say? I've been watching too much Blackadder)


“Marie-I have an award for your blog at my place. You may pick it up whenever you wish. Congratulations.
~ tricia”

Tricia wrote those words on October 30, 2008 in her blog, Papercages.
Somehow I don’t think she intended “whenever you wish” to mean MORE THAN THREE MONTHS. But better late than never. No, I think that is a ridiculous saying, because the road to Hell is paved with good intentions. However, it is the thought that counts. AAAAGGGHHHH! Somebody stop me!!

Tricia’s award came with rules. I hate rules. They make my head hurt. But I will try to be a good girl, since she was nice enough to give me the award.

I am asked to nominate 7 other bloggers for the award. Here are some blogs that I really enjoy. Some of them are funny. Some of them are funny and wise. Some are gentle and thoughtful. Some are all of these. I was going to split them into categories, but God forbid I put someone in a ‘funny’ category when they think they should be in a ‘thoughtful’ category!! That would be horrible. “Here’s an award, let me hurt your feelings”. Yikes!

Anyway, here they are IN NO SPECIAL ORDER:

lilaphase

A Nice Place in the Sun

On the Verge

The Mother’s Handbook

Somewhere in New Jersey (Great pictures, too!)

Dead Rooster

What Were You Thinking?


AWARD THE SECOND

“I am pleased to give this award to my dear friend Marie. Reading Marie's blog has convinced me that a sense of humour and an ability to laugh at one's self will help a person get through most of life's problems. Please accept this award, Marie!”

This award is from my dear friend Manju, who lives in Mumbai. She is smart and perceptive and writes a wonderful blog, Of Cabbages and Kings , which opens a fascinating window on everyday life in India. Best of all, Manju’s award came with no rules!!


AWARD THE THIRD


Nicole is a relatively new reader to my blog and a very sweet person. She writes a blog about her life raising twin boys in One, Two Princes Stand Before You .

Nicole was kind enough to give me not one, but TWO awards.

Unfortunately, they came with rules!! EEEEECK! A LOT of rules. Ouch, my head. But she was nice enough to think of me, so I will give it my best.

The first thing is I have to tell are 10 Honest Scrap things about myself. Considering I already told all of you my New Year’s Eve Ball story, you can guess that I usually am mortifyingly honest in this blog. But let me see if I can come up with 10 things that aren’t too boring. Or humiliating.





1) I was born in New York City but I grew up mostly in the Bronx. Yet I do not have a New York accent.
2) I smother my eggs in ketchup, which I wasn’t allowed to do at home because my mother said it was vulgar.
3) I would rather read than clean the house.
4) If I had the money, my house would be floor to ceiling books.
5) If I thought I could manage it, I would have 100 cats. Or maybe even more.
6) I am extremely gullible.
7) I am very impatient about a lot of things, but I never mind waiting on lines.
8) I hate the summer, everything about it, the weather, the clothes, the food, everything, and I always have, even as a kid. I long for autumn every year.
9) I have a hard time throwing things away. Hey, you might need it in ten years, you never know!
10) Because I read a lot, I know a lot of trivia. My husband used to say I knew more useless shit than anyone he had ever met. He would say that because I always beat him at Trivial Pursuit. Sore loser.




Ok, now with this award I have to list 5 addictions. Easy peasy:

1) My children
2) My friends
3) My pets
4) Reading
5) Museums

And now, I have to give these awards to five other blogs.

Here are my choices:

The Witty Ways of a Wayward Wife ( I already gave Jane a well-deserved award once before, but she is one of my dearest blogging friends and has the BEST blog; plus, one can never have too many awards; plus plus, I am dying to hear Jane’s 10 Honest Things.)

The Junk Drawer

Papercages

Redhead Ranting

Kitchen Retro


AWARD THE FOURTH

There was another award granted to me by a lovely, generous reader. But the horrible thing is, I can’t remember who it was! See, Ingrate of the Decade. I didn’t make a note of it or bookmark the page and even though I have spent days going through blogs I might have read to find it, I have not been able to.

So I have created my own 'award', to be given to people we may offend or hurt, even when it is unintentional:

PLEASE FORGIVE
MY SORRY BUTT!

God Bless America

For the first time in a very long time, I am proud to be an American.

Barack Obama, with his dignity, intelligence and stature, will now be the face of leadership for the United States. A face that represents so much of our rich, cross-cultural society. A face that doesn’t wear a vacuous smirk. A face that reflects grave comprehension of the pain and fear our citizens are experiencing in these terrible times. A face that had no advantages apart from brains and democracy to lead him to the White House.

John McCain is clearly a good and brave man. As Obama said last night, McCain has experienced horrors that none of could us imagine and few of us could endure unscathed. McCain was gracious and generous in his concession speech, markedly exhibiting distaste and disapproval when some of his audience contemptuously booed at the mention of their new president’s name. I believe him in his pledge that he will do everything in his power to help Obama as he leads our country.

I want to believe McCain, because working together is the only way we are going to be able to move forward. Working together, our elected officials can restore the good name and credibility of the United States. Together they can create an effective machine of peace and a model of honorable and responsible leadership.

As Helen Keller once said (in my Quotes to the right), “Alone we can do so little, together we can do so much.” Together, we chose Barack Obama.

God bless America.