Back in the Hospital (I could not think of a catchy title)

I started feeling crummy last week, with a pain in my side and no appetite.  I slowly got worse until finally the pain was so bad it was making me sick.  When Nicole, my home health aide, arrived on Thursday, she took one look at me and said “I am taking you to the ER.”

When we got there she peeled up and parked all crooked, as though I were a trauma victim bleeding to death.  We hadn’t brought my wheelchair because we figured there would be one at the ER.  But there wasn’t.  So my sweet Nicole, who takes such good care of me, had a Terms-of-Endearment-Shirley-Maclaine melt down, yelling “What kind of hospital doesn’t have wheelchairs?!?!”

Well they dug one up, registered me, realized I was a minor VIP (past director in the system and daughter and son-in-law both still working for the hospital) and the testing began.  They diagnosed exactly what I knew it was.

An inflamed gall bladder.  Cholecystitis.  Mundane, middle aged, ordinary.  Embarrassingly banal.  Minor surgery, admitted in the morning, home by evening.

Unless you have MS, lymphedema and a partially paralyzed diaphragm.  Then it is a medical emergency, a crisis that requires consults with a cast of thousands:  anesthesiologists, surgeons, pulmonologists and, I swear, passers-by on the street.  The consensus: the surgery to remove the gall bladder is simply too risky.  I was facing days in the ICU, prolonged intubation and a possible tracheotomy (an opening cut into my throat into which a tube would be inserted).  Not to mention a slow and horrifying death.

So now the plan is to do a less invasive procedure that will hopefully quiet down the gall bladder, prevent it from getting gangrenous and buy some time to figure out some more options.

In the meantime, a mass has been found on my liver.  Because all the other stuff was not enough.  So I had an MRI for that yesterday.  I had to leave the hospital because they had to use a special machine.  When the EMT’s arrived to transport me, the first guy took one look at me and, at the top of his voice, announced “No way is she going fit on our stretcher”.  I could feel my face get hot, I was so mortified.  The nurse and aide gasped.  Even his partner looked uncomfortable.  Trying to maintain some shred of dignity I told them I never had a problem “fitting” on a gurney before. How about I just try it?  He ignored me, went into the hall to call his dispatch and loudly asked how long it would take to get a bariatric stretcher.  Four hours.  I would not make my appointment.  But I knew I didn’t need it, that I would be ok on a regular gurney.  Finally he reluctantly agreed to let me try, all the while muttering dire warnings about hideous discomfort to my fat, fat, fat body.  And guess what?  I fit, as I knew I would, with room to spare, and was completely comfortable.

This guy is now my candidate for The Asshole Hall of Fame.

On the plus side, when I got to the MRI center, the tech was my old friend Nicky, who has been doing my MRI’s since I first got sick in 2005.  He is the most incredibly kind man.  After one MRI a few years ago, when I was in tears from so much pain, he actually got down on his knees, put on my socks and sneakers and tied them for me.    I had forgotten he told me he moonlighted at this place.  His sweet demeanor and constant concern for my comfort was a real gift.

Then when I got back to the hospital, the staff had a surprise for me.  They had been so upset over how the EMT had treated me, they moved me to a private room and presented it with a big “TA DA!!” like a Christmas present.  They are the best.  So, so kind.  It makes a huge difference.

My friends on Facebook have also overwhelmed me with their love and caring.  Message after message of support, encouragement, prayers and reassurance are like lifelines.  I am so lucky.

So now I am just hanging out, day four in the hospital, waiting for the results of the MRI to diagnose what is going on with my liver.  Tomorrow I should have the minor procedure.  My pain level is pretty high, so I am existing from shot to shot.  One doctor was just in and asked how I was doing.  I said my pain level was up there and the medicine just wasn’t helping as much anymore.  He didn’t respond, but asked a few more questions and then said, ok, glad you are doing well see you tomorrow.  Um, what about my pain? I ask.  Oh…well, make sure you ask for your medicine when it is due.  Smile.  Bye.

Sigh.

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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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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.

A Gift

I have many wonderful people in my life who are very good to me. Sometimes, when I get lost in a maze of ceilings and finances and loneliness and illness, like this week, I tend to forget that.

My friend Debe in Missouri is an accomplished, innovative artist. She also has MS, but continues to express and generously share her talents.

Yesterday I was surprised by a package. And this is what was inside.

The attached note says:

Sweet Marie,

A bottle of Goddess dust to help ease your pain and worries.

Gaze upon it. Remember I will think of you daily and send healing prayers.

Her kindness has literally taken my breath away.

To say ‘thank you’ feels like the most banal and inadequate response possible. So what I am called to do is to share her love and hope with anyone reading this post who also has a need for healing prayers. I know so many of you have just as many things to deal with and worry about as I do, if not more.

Even if I don’t know you, even if I don’t know what you are carrying, please know I am sending healing prayers your way and will also think of you daily.

And thank you Debe, for this treasure, for your love and for your friendship.