Choosing Happiness

Today, March 20, 2015, is the third annual International Day of Happiness, as decreed in a proclamation from the United Nations in 2011.

On the surface, it might sound a little silly or even preposterous, considering the state of the world and the suffering so many people endure in their personal lives.  Wars and partisan violence rage and people experience inexplicable heartbreak every day.   There is injustice, disaffection, poverty and hunger right here, within blocks of my home.  My sister is gravely ill and I have experienced a series of misfortunes over the past decade that are surreal in their number and impact.

But today the United Nations implores us to take action to be happy, with this year’s theme being to achieve happiness by focusing on your connection with others.

I have had to face many challenges in my lifetime.  I discovered early on that you could choose to give in or you could fight.  By nature I am stubborn and I usually choose to fight.  On one hand, this is not a particularly positive trait to have.  It is not easy for me to give in on anything.  It can be very difficult to admit when I am wrong and to say I am sorry.  Being stubborn means you often will stay in a bad situation because you refuse to acknowledge you cannot fix it.  You tend not to make the healthier choice of cutting your losses and moving on.

But on the other hand, being stubborn also means stepping up to a challenge and overcoming obstacles.  It means pulling yourself up by your bootstraps and getting on with it, which I have had to do more times than I can count.  And it means tenaciously holding on to good things, like hope and friendship.  Even though I can’t get out very easily, I work at keeping in touch with my friends, my loved ones.  I am so lucky to still have friends in my life that go back to my earliest childhood.  And I am so blessed to have my wonderful cousin, who has always been there, like a big brother.  And, despite being estranged from some of my beloved children, I will never, ever, ever give up on them or stop loving them, no matter what.  The absolute happiest moments in my life have all involved them.

I have discovered through my stubbornness that you have a choice in life.  You can be happy or you can be miserable.  I have been both.  Happy feels a whole lot better than miserable, despite the fact that it can be harder to maintain.  It is very, very easy to sink under the weight of the terrible things that happen to us.  On the surface, it might seem I don’t have a lot to be happy about.  And it is true, I am only human and I wobble constantly.   But the recommendation for today, connect with others, is the key for me.  My friends, my children, my grandchildren are my lifeline.  Just their voices are enough to lift my spirits.  And they are so good to me.  We all need that.  We human beings need to be kind to each other, to stay connected.  Connection feeds itself, it is like ripples on a pond.

 

If only people could stay connected, on a global level things could be so different.  Even as I type that, I realize it sounds not just naïve, but downright simple-minded.  I know that concept doesn’t take into account mental illness, natural disasters and other things we have no control over that cause great suffering.  But the song is so true, from South Pacific, you have to be taught to hate and fear:

You've got to be taught

To hate and fear,

You've got to be taught

From year to year,

It's got to be drummed

In your dear little ear

You've got to be carefully taught.

You've got to be taught to be afraid

Of people whose eyes are oddly made,

And people whose skin is a diff'rent shade,

You've got to be carefully taught.

You've got to be taught before it's too late,

Before you are six or seven or eight,

To hate all the people your relatives hate,

You've got to be carefully taught!

(Songwriters: Rogers and Hammerstein/to hear it sung, follow this link here)

  

We are not born hating, we all know that.  So why haven't we been able to fix it in all the thousands of years the human race has existed?  Peace could be possible if we were more connected by understanding, compassion and acceptance.  We are born with the capacity for happiness.  It is others who take it away and it is others who can maintain or restore it.

I pray from the bottom of my heart that all of you reading this have or can find happiness.

I leave you with the prayer from St. Francis, which I believe to be a formula for connection and, ultimately, for happiness:

 

Lord, make me an instrument of your peace,

Where there is hatred, let me sow love;

where there is injury, pardon;

where there is doubt, faith;

where there is despair, hope

where there is darkness, light;

where there is sadness, joy;

O Divine Master,

grant that I may not so much seek to be consoled as to console;

to be understood as to understand;

to be loved as to love.

For it is in giving that we receive;

it is in pardoning that we are pardoned;

and it is in dying that we are born to eternal life.

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Happy Bruceday

For our birthdays (fourteen years apart in life but two weeks apart on the calendar), my sister Cathy and I celebrated by going to see Bruce and the E Street Band play their first concert in the new MetLife Stadium here in New Jersey.  My daughter sweetened the deal by hiring a car to take us and my power wheelchair to the concert!  Woo hoo! 

It proved to be a…let’s see, how can I put this?  It proved to be an eventful evening.

My mobility is extremely limited, so it is really hard for me to get ready to go out.  Taking a shower and getting dressed exhausts me.   And since I rarely do go out, I was very anxious, nervous about getting around ok and worried about the level of pain I am struggling with.  Waiting for the car to pick us up, I was a neurotic mess.  My sister was talking me down, standing in the kitchen looking out the window when she says “Did you order a white stretch limo?”  And I start laughing because I think she is making a joke and she says “No, really, that’s what’s out there.”

So I pop up like a demented jack-in-the-box and to my horror I see that is exactly what is out there – a vehicle that we could never fit my power wheelchair into no matter how hard we tried.  I lurch out to the driveway, freaking out.  “What happened to the car I reserved?!?”  I cried.  The driver was like “What car?”  I told him we had to transport a power wheelchair and he said, oh no one told him that, but don’t worry, we’ll fit it in.

Then he saw it.

Acknowledging there was no way to fit the wheelchair, he started calling his office.  After forty five minutes of hemming and hawing, it was finally determined that I would have to go with my manual wheelchair, which meant I would be uncomfortable all night and my sister would have to push me everywhere.  By that time I had calmed down [somewhat] and was just grateful I was going to the concert.

On our way:

Cathy, innocently thinking the worst was behind us.

The rest of the limo.  We sat on the back seat giggling like mad.

Once on the road, he drove like a maniac.  We were plastered onto the back seat by the speed of the car.  Cathy kept murmuring “We’re gonna die.  I know it, we’re gonna die.”  And she’s the calm one.  I was actually relieved at first when we hit traffic, because it meant he had to slow down.  Or so I thought.  He would speed up to the car in front of us and then slam on the brakes, speed and slam, speed and slam, lurching the car repeatedly until I was so car sick I thought I was going to throw up.

At the stadium, which he had never been to before, he had no idea where he was going or where he was allowed to drop us off.  He finally unloaded us about a half a mile from the entrance we had to use and my sister had to push me all that distance, over uneven asphalt with few curb cuts.  Then I realized in the rush to get out of the car, as he had been blocking traffic, I had left my camera behind.  I was TICKED.

But we were here!!  We let all the car stuff go and were determined to have a blast!  We had floor tickets for Bruce!  It didn’t get better than that.  We gave in our tickets, went through security and got to the wheelchair section of the General Admission floor.  A staffer snapped “Where are your wristbands?!?”  Wristbands?  What wristbands?  “You need to get your wristbands at the white tent outside.”  Cathy goes, “I am not pushing my sister all the way back outside and then back again!”  He eyeballs me and replies, “Ok, you can leave her here, just take both tickets, they’ll give you her wristband.”  So Cathy goes and spends 15 minutes looking for the white tent.  But it actually was YELLOW.  He had told her the wrong color.  Then they wouldn’t give her two wristbands even though she explained the circumstances and she had two tickets.  Finally she got a hold of a manager who gave her two wristbands and initialed the tickets.  Inside, they stopped her and examined the initialed tickets as if they were classified government documents related to national security.  They would not let us sit until they verified the initials were valid!!  Finally we got situated on the platform, with strict instructions as to how we were to stay positioned.  We were exhausted, and the concert hadn’t even started yet!!

But what a concert it was!!  Phenomenal!  Bruce, 63 years old on September 23, played almost four straight hours.  He rocked, he mugged, he goofed around, but he was somber too.  He played a few more ballads than usual and gave some introspective intros.  He talked about the family ritual of going to Jersey Freeze for ice cream after dinner in the summer.  We did that too.  I often wonder if we were ever there at the same time on a hot summer night as children.  He told of his memories of his late father taking them to the cemetery to put flowers on his aunt’s graves.  My husband is buried in that same cemetery, not too far from Mr. Springsteen.  There are so many connections.  Bruce talked about how the older we get, the more ghosts walk with us.  As children we are afraid of ghost stories.  As we age, it is a comfort to have the company of the spirits of those we love.  That truly resonated when they showed a slide show of Clarence during Tenth Avenue Freeze Out.  At the line “…and the Big Man joined the band…” everything stopped and all those memories of Clarence flashed across the screen.  In some pictures they were so young!  It was really moving.  Then they started up again, clearly missing him but happy to have had him in the band.  Clarence’s nephew Jake is playing sax with the E Street Band now and he is fantastic.  And just so cute.

Bruce plucked a little girl from the audience to join him on Waiting on a Sunny Day.  She was absolutely adorable, he was hilarious, being a big ham, and it turns out she was the daughter of a friend of my sister’s.  Here is the video her dad took:

My sister went to get a drink and on the way back spoke to one of the staff about being able to get our car closer to the stadium to pick us up.  At first they said no, but she pushed the issue.  While the concert was going full blast, one of the staff came and screamed in my ear that they would get a cart to drive us to the car.  So I screamed back in her ear that was impossible, there was no way I could get in and out of a cart.  She got her team leader and he came over to me and screamed the same thing.  I was getting really upset.  I screamed back at him that I had paid a lot of money for these tickets and I wanted to enjoy the concert.  I added there was no way I could do the cart thing and I would discuss it after the concert was over.  I was close to tears and I was shaking with frustration and embarrassment.  He threw up his hands in an exaggerated gesture as if to say “This woman is impossible!” and that truly distressed me.  Bruce was about to start an encore, but this dispute had really taken a lot of the fun out of it for me.  Ironically, the band played something like six songs for an encore, so it was almost another hour before the concert was over.

By that time the team leader guy was gone and the staff member who oversaw the handicapped area of the General Admission section said to us, I will take you to your car and then said something else that made it sound as though they were going to let the car pull up.  But that was not the case.  She pushed me as far as the stadium border and then Cathy had to push me the rest of the way, a total of a half a mile again.  I gave the girl my card and I advised her that I was going to pursue this, as it appeared they were not complying with the Americans with Disabilities Act.  Not to mention, with very few exceptions, their customer service was appalling. 

It took a while to coordinate with the driver of our car in the parking lot, but finally we were on our way home.  There had been elements of the absurd and the stressful and the stadium fascists staff worked hard to make things as difficult as humanly possible.  But nothing could take away the pleasure I got from the great company of my beloved sister and an amazing concert by Bruce and the E Street Band.  

9/19/12  Saed Hindash/The Star Ledger

Next: The Limo Company and the Stadium Have Some Splainin’ to Do

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God Will Always Protect You?

My daughter Elizabeth did this drawing for me over 14 years ago, when she was about nine. I have kept it on my desk ever since. Not only is it precious to me because her little girl self made it, but the message is such an inspiring one, a little boat bobbing around in stormy waters, safeguarded by the hands of God. It has been battered a bit over the years, but tape and a sturdy frame keep it preserved.

Like many other things that get lost in familiarity over time, I forget to really look at it. It blends in with all the other things that are always in front of me. But it caught my eye yesterday. I moved it down to be closer to me, so I can really read it every morning. The picture is a perfect analogy for my life right now, but I am struggling with the message. Without a job, becoming more disabled every week and in dire financial straits, I do not feel protected by God. I feel betrayed and abandoned. I try to remember that corporal things should not be so important, that it is what I do and how I live that really matters. But the prospect of losing everything I have worked so hard for is devastating. Maybe my priorities are skewed. However, we have to live in the real world and things like a job and a house do matter.

My life is filled with people who are very good to me, wonderful friends who truly care and affirm me in many ways. So for now I have to accept that is how God is protecting me. It is easier said than done, but I need to believe He speaks to me through them. While I feel overwhelmed and full of fear and grief, the message is, ultimately, everything will be alright.

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Fireworks. Celebration. And My Little Dog, Too.

I wrote this post as a submission to Grand Rounds, so it has info most of you are already familiar with but I had to fill in for strangers who might read it. The theme was "Celebration". I don't know if my piece will be chosen for this week, but the topic inspired me. :)

Fireworks. It felt like fireworks going off in my arm, hot, exploding white light.

I hit the cement patio like a meteor, my foot caught in a noose of loose wire that I never saw. My face was cut by my glasses, my hands were scraped and bleeding, as were both knees, but it was that arm where the fireworks were bursting repeatedly.

That was two years ago. I shattered my shoulder in that fall and have had three surgeries to repair it, including a partial replacement. But my arm still, for the most part, hangs painful and essentially useless at my side. And no one can figure out why.

Multiple Sclerosis is considered the most likely culprit for the lack of healing and constant pain. I have been diagnosed for five years now (a 50th birthday present!). And because of the mystery that is MS, an accident most people would have recovered from long ago continues to impact every aspect of my life.

MS has left that life, formerly organized, prosperous and going nowhere but up, in shambles. It cost me my career in executive health care. A widow and now unemployed, I cannot afford to maintain my beloved home, a charming Craftsman cottage, which is crumbling around me. Everyone I know is losing patience, constantly pressuring me to give it up. I am barely scraping by. I am a nurse and I have a Master’s Degree, but I am sewing to make ends meet, like something out of a 19th century novel.

So what do I have to celebrate?

I am still here, that’s what. I rise up from each blow and figure out what I can I do next. I keep reinventing myself. It can be almost a weekly occurrence, but hey, flexibility is my middle name. I am no Pollyanna. I do not accept that ridiculous deception that MS is a ‘gift’ that has helped me to stop and smell the roses. It is a cunning, vicious thief that has stolen so many things from me I cannot even make an inventory.

But what is left is precious. And that is what I acclaim. That I can continue to enjoy my beloved children, my adorable grandson, my wonderful, giving, loving friends. There is my sweet dog, who gives me unconditional adoration. There are the many rewards I get from writing my blog, such fun and so sustaining. There is the breeze that comes through my bedroom window in the early morning, cool and promising. A moment like that is a gentle fragment of bliss.

I soldier on. I will not profess it is easy to maintain, it's not, it's hard as hell. Some days, I can't get there. But I keep reasserting my maxim and working to internalize it. I read, recite, repeat: Life is good. Love it. Be grateful.

Adventures of a Wine Taster

(From last year... )

There is nothing like an MS gathering to depress the crap out of me.

I have a business connection with a very, very nice man whose mother has MS. Earlier this summer, he asked me to join the fundraising committee for a large, swanky annual event that he organizes. It is to endow a comprehensive MS center near me. I thought, why not? I do not get out enough, do not really socialize outside my small circle of dear friends. My therapist, who I adore and am morbidly attached to, is, for good and obvious reasons, always encouraging me to pursue other support resources. And it was flattering to be asked.

So I was on board. The tickets for this wine tasting were so expensive, I could not bring myself to send invitations to all the people who generously support me in the MS walk, so I didn't even really tell any of them about it. I just sent solicitation letters to businesses. My daughter wanted to come, but she wasn't forking over $150 bucks and neither was I for her.

So I went alone.

After a long work day in the city, I knew I would be on my feet for most of the evening. My back really hurts and my legs are wobbly, so I decide I have to use The Cane. It is THE Cane, because it will NEVER be MY cane. Yuck.

Here's a fact that would probably be painfully obvious to anyone but a knucklehead like me: An event that requires one hand for your wine glass and one hand for a plate of hors d'oeuvres will go awry if you already have a cane in one of the aforementioned hands. Something's got to give.

Add an obstinate teeny tiny purse with a very long strap to the mix and you have a disheveled mess.

So there I was, alone, not knowing a soul in the 300 or so people there, futilely trying to keep my purse on my shoulder, pathetically stumbling around on the grass, gripping an empty wine glass and a cane.

I desperately wanted that wine glass filled. To the brim. Maybe even more.

Oh, and I was the only person there with a cane. The only other visibly impaired attendee was in a wheelchair. And I managed to step on his foot. Yep, I stepped on a crippled guy's foot. How is that for mortifying?

I finally found the wife of the chairman, who I've only met once, but she was so, so sweet. She asked if I had gotten anything to eat and I piteously gestured with my full hands. She steered me to a table with some friends of hers, introduced me and asked if I could join them. What lovely people they were! So that was really nice.

Now to get something to eat. I was famished. My wayward purse was left on the table. I would simply have to trust these people with my millions. Ha ha. I gamely grabbed TC (The Cane) and lurched around the maze of tables and chairs, stooped under the ropes around the edge of the tent, gingerly climbed over the wires to the sound system and staggered over to the food stations. At this point I was so hungry I could have used a trough, but I settled for the 4 x 4 inch plate. With the plate in one hand and TC in the other, I had no way to carry the fork. So I slipped it into my pocket. The waiter's eyes bulged. "Don't worry, " I said, "I'm not stealing the silver, I just have no other way to carry it." He looked dubious, but didn't call the dogs.

Back to the table via the same circuitous route. Put my plate down. Take the fork out of my pocket. Take my wine glass and repeat the journey for a glass of wine. Back to the table. Sit down to eat. Realize I forgot a napkin. I practically cried. Started to get up AGAIN, when one of the women at the table offered to get one for me. I was so grateful.

I tuck in to my now ice-cold food, while chatting with these pleasant people. My fork slips out of my numb right hand and lands on the grass. I look at the fork in the grass. I look at the food tables with the forks, light years away, and God help me, I leaned over, picked up the fork, wiped it with my napkin and kept eating. I am sure my companions were horrified. But I figured, it's grass. What is the worst thing that could be on it? Pesticides? So what, I'm going to get a horrible, disabling neurological disease? Too late! I already have one. Ha ha ha.

By this time I was absolutely exhausted. I said good night to my table mates, good night to the lovely wife of the chairman, studiously avoided the man whose foot I stepped on, who was giving me the evil eye, and gimped off into the night.

The event raised over $200,000. So I guess it was worth it. But it left me with a wistful hangover that had nothing to do with the wine.