A Little More of Me

Because I apparently have an awful lot to say, I’ve started a new blog.

I love to read. Love it, love it, love it. In case you didn’t get it, I love it. And naturally, I love books. I have hundreds of books and I have bookcases in almost every room in my house. To me a book is not only beautiful, but full of promise. Either a brand new adventure or a fond and familiar place to get lost in.

I was going to do some posts about books here, and then I thought, heck, I will just start a whole new blog, about nothing but books.

Aren’t I full of myself the brave one?!

At any rate, you can find my new book blog at The Shore Bookworm. I plan to focus on books and reading and the impact of both on our lives. I am looking for guest posters, too. If you have something to say about how books are important to you, drop me an e-mail!

Stop by, have a look and be sure to leave comments!!

A Great MS Walk!

Many, many thanks to everyone who supported Team Cooper in last Sunday’s MS Walk. There were 20 of us on the walk this year and we had a great morning. As usual in April, it was cool and windy on the boardwalk, but we had plenty of sunshine and super company. About 2000 people take part in the walk in Belmar, so the atmosphere is full of positive energy.

The best part is we are over 2/3 of the way to our goal. We have raised $2019.00 out of the $3000 we are shooting for. It is not too late!! I can still collect donations until June, so if you are so inclined, I would be incredibly grateful (click here to donate).

But I am still thrilled at the generosity of everyone who contributed, in person, financially or in spirit!! Thank you for bringing us that much closer to a cure for Multiple Sclerosis.

A Shameless Plug

Tomorrow is the 21st Annual MS Walk and Team Cooper is taking part for the fourth time.

Normally I am a total cynic about things that are MS group related. Call me crazy, but I have a Bad Attitude towards the disease that has devastated my life. It is one of those I-don't-want-to-belong-to-any-club-that-would-have-me-as-a-member things (with apologies to Groucho). Granted, there are worse clubs to belong to. But this one is pretty sucky.

However, the MS Society does do a lot of good work, both in directly helping people with MS (they loaned me the power chair I use for the walk, cheerfully and without question) and in supporting research. The walk is my tiny way of feeling proactive. And, believe it or not, it is actually fun. We walk on the boardwalk, we have a great group and it a terrific way to feel like we are doing something positive.

In my dreams, more than anything, I would love to have everyone of you incredibly wonderful people who read my blog come with us. To meet you all in person and be able to talk and laugh together would really be a thrill. Sigh. I know that is not possible, but how much fun would that be?!?!

Although, anyone close enough to Belmar is more than welcome!!

Barring that, any donation you could make to the MS Society for our team would be humbly appreciated. You can connect to my page here. We are more than halfway to our goal this year. Last year we exceeded it. I would love to be able to that again!

But finally, if you could just pray for us or keep us in your thoughts, that would be the best thing of all. Pray that we have good weather. Pray that we reach our goal. Pray that we find a cure for Multiple Sclerosis. Pray for everyone who has to deal with illness and hardship.

Thanks everybody!!!

A Long Time...But Went So Fast

Thirty two years ago today, I became a mother. I have to say, it was the happiest day of my life.

My sweet baby boy is a grown man now. Married. A lawyer even. (You know I had to squeeze that in, what kind of mother would I be other wise?!?!)

Along with my other children, he has given me the most precious, golden seconds, minutes, hours of pure joy. Watching him grow, watching his personality develop has been a gift from God. He was always a little serious, but can be incredibly funny. His smile, his laugh still lifts my heart. Will always do so.

Thank you, Ryan, for being my son. I love you.

A Station Break...

Until I can get the next post on, I give you my grandson at Easter Sunday brunch:


How long do you think it took before it dawned on the six adults at the table to give that poor child a smaller spoon?!?!

A Little Change

Yep, I've pimped my blog.

While I would not move a stick of furniture from it's place for my entire life, I really like experimenting with the look of the blog.

I learned how to use digital scrapbooking pieces and I designed the layout here. I don't have all the kinks out yet, I lost one little element at the bottom, but I can fix that. It was fun fooling around with all the different combinations. Who knew that stuff was even out there?!?!

Anyway, I worried that if it was too frou-frou I would diminish any shreds of credibility I have after posting LOL Cats. So I tried to find a line between being over the top, but expressing hopefulness about the future.

Writing this blog has been one of the most rewarding things I have ever done. Connecting with readers, getting feedback about how what I have written has inspired people has been magical for me and that is what I wanted to reflect in the background. It has been so good to be writing so much. I just got my first paying freelance writing job!! AGGHH!!!!

Let me know what you think! (Unless what you think is really bad. In that case, lie to me. :) )

Before and After

Reflections on what was then and what is now.

Before. Before was me, hitting the ground running every morning. Having my babies at home. Abundantly healthy. Going to the doctor every, maybe five years or so? Never getting sick. Never taking naps. Never ‘resting’. Widowed at 39, raising four kids, working full time, buying my own home, painting each room of it myself. All the gardening, all the maintenance: me. Taking my kids abroad. Traipsing through every inch of London. Every museum in New York. Walking, walking, walking. In graduate school for my Master’s. Never giving a thought to putting one foot in front of the other. Loving my life.

The middle. Numbness in one hand. Then the other. Ignoring it because…it’s nothing. Then numbness in my feet. Pain in my back. Soooo tired. Sometimes, I can’t empty my bladder. Surely this is my imagination. Feeling a spreading squeeze around my middle. Hard to breathe. Then hard to walk. Then…

The emergency room. Admission to the hospital. Bladder cath. CAT scan. MRI’s. Lumbar puncture. Blood taken and taken and taken. A diagnosis of Transverse Myelitis, possibly caused by Multiple Sclerosis. But, a condescending young neurologist bluntly says to me, at 50 you are too old for Multiple Sclerosis.

Oh yeah?

After. The neuro every three months, my GP every three months, a monthly infusion of Tysabri at an oncologist’s office. Tysabri, an immunosuppressant that can allow a fatal brain virus to get a foothold. Blood work every month. Ten daily prescription medicines (thirteen pills all together). IV steroids periodically to treat particularly intense exacerbations.

A cane. A walker. Even a wheelchair sometimes. No more hitting the ground running. Ha, no more running. No more traipsing anywhere. The beloved house I can no longer care for is crumbling around me.

Relentless pain. Disobedient feet that feel as though they weigh 200 pounds each. Constant fatigue. Muscle spasms that twist me like a pretzel. Twitching, jumping limbs and digits. Perpetual balancing: “If I do that in the morning, I won’t be able to do this in the afternoon. Which is more important? Which do I choose?” Because I can’t have both.

Anywhere I go I have to know, are there stairs? How many? Is there close parking? Is the bathroom nearby? Is there water so I can take my medicine? I have to think about literally every move I make. Or can’t make anymore.

Fear. Unremitting, unshakable fear. I am single. Who will want me now? How would I tell someone? Is this the day I won’t be able to take another step? Is tomorrow the day I won’t be able to get out of bed? Will I go blind? Will I choke on my next meal because I can’t swallow? Who will take care of me? Where will I live? How much longer do I have?

This is my new life. In four years, I have not yet learned to love it. But this is the only one I’ve got, so I keep trying.

To My Oh So Patient Friends

There is a wonderful blog written by the CEO of a major hospital in Boston. It's mission of ethics and transparency are inspiring in this day of health care bedlam.

It recently hosted Grand Rounds, a revolving blog carnival of posts pertinent to that week's health care subject. This week it will be hosted by another great blog, Getting Closer to Myself.

This is read by many medical professionals. I have a possible opportunity to share my story of developing MS on the site and I think it is important to go for it. I think it is essential for health care providers to have an understanding of the impact a chronic disease diagnosis has on a patient's life. And how their approach can make such a difference.

So I beg your indulgence in posting yet another essay about MS, which even I am getting sick of hearing about. lol

Laughing Out Loud On a Saturday Morning

It’s Saturday. I have had a blissful morning of quiet, tea and reading. I am feeling so good, I need to share the joy.

Crotchety Old Man Some of my readers will recoil in horror, sneer in derision and have to cover their eyes, because I am about to utilize my favorite, to some the lowest form, of humor…drumroll please…LOL Cats!!

Sorry, I can’t resist. This is just what we need on a sunny, peaceful, spring-like morning.












Oh come on! You know you smiled. These are HYSTERICAL.

OK, I’m easy.

Human Kindness

The baby I wrote about yesterday, a child I do not know, nor do I know any of his family, is doing somewhat better today. I was so glad to see that message in his mom’s blog.

That was really good news.

But here is what I am looking at as more good news.

The appeal to pray for this little one started with his mother’s posting on line. She does have a lovely site and I know she had quite a number of followers before Stellan got sick 2 weeks ago. But the response is flat out staggering.

Her emotional but beautifully written posts are receiving 300 to more than 600 comments each! Her blog is getting over 100,000 hits per day. Take a look at Stellan’s Name Gallery on her site. People have drawn and formed his name in every conceivable way and have sent pictures in, declaring their loving thoughts and prayers. There are HUNDREDS of them. From all over the world.

Jennifer, the mom, had been relegated by the hospital’s “Hospitality Coordinator” to a miserable little room that had no shower, and she had to be out of by 6 every morning. After learning this, one reader arranged for a night in a nearby hotel. Then some other people did the same. And then some others. Jennifer reports incredulously that she is now a VIP at the hotel, where she and her husband finally were able to sleep in a regular bed and take a shower.

Other friends of theirs started a fund to help them through this rough time.

My daughter was six when she had her heart surgery, three weeks after my husband died. I remember the constantly suppressed panic, the fear, the exhaustion, the despair that Jennifer talks about. My friends and family were very good to me at that time. But this is the entire planet.

Everything I want to say about this is so saccharine, so schmaltzy, I fear losing readers. However, even if you take the prayers out of the equation, even if you have a different belief system, think about what is happening here. It is simply a remarkable snapshot of the power that we all can have to effect good.

It was scrolling down that gallery of pictures of Stellan’s name that really struck me. Dozens and dozens and dozens of “Stellan”’s, in every possible medium. The pictures started to build momentum for me and flew by in a blur as I scrolled down. I caught my breath to think of the astonishing potential we have as human beings to be kind and generous. And I sighed to think of how often we aren’t.

I so hope Stellan continues to improve. And I hope the compassionate energy this is creating can eventually ripple through all our lives, around the globe.

Prayer Campaign

I happened on a blog yesterday that has truly touched me.

Jennifer is the mother of four under four. Her blog (here) is a charming celebration of her family, a family that was pretty ordinary until a few months ago.

Her youngest baby, Stellan, was born with a serious heart condition. Jennifer’s blog got the word out and pretty soon people all over the world were praying for him. They demonstrated that by holding Stellan’s name up in unbelievable places, the desert in Africa, a street in Argentina, in front of the Eiffel Tower. He went home a healthy little boy.

Stellan is now five months old. He was beating the odds until about 10 days ago, when his heart began to beat out of control. He is not doing well at all.

Jennifer is blogging about his condition several times a day and it is simply heartbreaking. I feel especially connected because my youngest was also born with a heart defect. There is no more helpless feeling than to see your child sick, to watch them go into heart surgery. But now she is a strong, beautiful 21 year-old. We were so lucky.

So I wanted to do this post to ask that those of you who have a tradition of prayer, pray for Stellan and his family. If that is not your tradition, please just think good thoughts that they will have the happy outcome we did. And add to this, for all anonymous families suffering with their children this day.