Ugly Like Me...

The quietest of blues...Vincent

I have these pictures in my closet where I write.  A big board with a hodgepodge of clippings and pics  of people and places that I have loved, randomly pinned in no particular order.

Things that inspire me. Sketches of my life, snippets of my history. A picture of Hotei, a Buddhist god, my friend Tara painted. A card of a bulldog wearing punk rock studded bracelets that she sent me.

A picture of a Susie Homemaker chick from the 50’s holding a cake that reads, “BITE ME” that my friend Kristin sent me somewhere around the time I was diagnosed with MS. A copy of my first published story.

This board holds many things that represent many friends and many periods in my life. Not all of my history has been pretty. Some of these memorabilia are dark; from darker times when I couldn’t quite find my way out of the tunnel. But, they also represent times when faith stepped in, and led the way. I don’t ever want to forgot those moments, or how far I have come, or how my faith almost literally carried me during these times.

My favorite picture is a picture of my late friend Vince at 86 years-old. It is carefully placed at the top right of this board. Precisely positioned so that he is always looking down at me as I write. In the picture he is sitting on the steps at his home on Cutler St. in Newark, just a few blocks from St. Lucy’s Church where he was christened as a child. I used to go there with him, and we would sit, and listen and hold hands. He was old and ready to pass, I was young and lost. For some reason, in that time and place, we needed each other. We were the best of friends.

Vincenzo Carnevale. He never married. He went to Georgetown on a track scholarship. He was fast. He was old-school Newark Italian. He loved his mother. Sometimes I can’t sleep because I lay in bed, trying to remember what her name was. He talked about her all the time. Rochetta? He thought it was the most beautiful name in the world. Mid-conversation, his mind would float away, and he would roll her name off his tongue like it was satin. Rochetta.

He said he was married to running and his best man was God. He couldn’t leave his mother. Those were the two biggest reasons he would offer when I would tease him about still being a bachelor. Every now and then he would ask me to drive him to the north side of Bloomfield.  There was a canteen there, in a barn, and a girl named Betty. A memory of dancing with this beautiful young woman. We’d drive over, make a series of lefts and rights, and never find it. He’d say, “Oh never mind. Must not be here anymore.” And we’d make our way to Holsten’s.

In his 80’s he bought a blue Mustang 5.0. It was his baby. He would joke that he wanted to be buried in it. He wore more gold than Mr. T. and he was, by nature, loud. You could hear Vince coming from a mile away. He would roll into the running store I worked at like a ball of thunder.  I always found his volume so ironic because his eyes were the quietest shade of ice blue. You could almost see your toes in them.

At the end of his life he struggled with a deep depression. He was hospitalized and almost catatonic. I remember T and I driving to Clara Maas Hospital to see him, and he was despondent. I handed him some pictures my students drew for him, and he couldn’t fathom why I was giving him these pictures. Where would he put them? He asked me to hold on to them. That was the precise moment I lost my friend.

He never truly recovered from this particular bout of depression. Shortly after he was released, he was removed from his home  and placed in a nursing home. Vince’s house was the same place he was born and raised. It served as a fortress. It was a museum, dedicated to his life, covered in pictures of his family and his past. Not an inch of wall was left to place anymore memories. There was a huge picture of him and I on one particular wall. I wish so badly I had that picture now.

After I had given birth to Zoe, I was battling a severe Postpartum Depression. I was struggling. No, that is too weak of a description. I wanted to die. Of course he couldn’t understand, but he always tried. And even though we were separated geographically, he never let go of my hand. He would send me letters with money to buy her diapers, pictures of himself as a baby comparing his blue eyes to Zoe’s. We would talk on the phone. After every letter, ever phone call he would say, “Keep your head up kid.”

I was in Florida, 2006 and I was really trying to get my life back.  I was walking across this park-like parade of grass to get to where I was staying when a stranger stopped me. He said, “This is going to sound crazy, but God or whoever told me to stop you and to say ‘keep your head up kid’”.

He explained he had never experienced anything like that, and was almost apologetic. I reassured him that I needed that message, thanked him, and continued on my way. Not very long after I got home I got the call, Vince had passed.

I couldn’t reconcile the feeling of loss, and the feeling of found-that was HIM speaking to me through that stranger. He found me, and used that stranger to tell me, one last time, to keep my head up…kid.

Keep your head up kid.

We have moved three times since those days. I have let go of many things. So, it is always crazy to me how I will be struggling with a particular ‘thing’ and I will find a letter from him, letters I didn’t know I still had. The other day one came out of the paper tray in my brand new wireless printer (that doesn’t work).  We didn’t have that back then. How would his letter, from years and houses ago, find its way into the paper tray of a printer we have had maybe six months, that we have never used?

Last week  I started writing my book.  I was frustrated and telling myself I am crazy for even trying, that I could never write a book. While sitting at the computer, AJ was messing with the printer and pulled out the paper tray. Jammed into the back was a letter from Vince. It held a clipping about an 11 year-old who wrote a book. It was as if Vince was saying to me, “If she can do it, you can do it.”

I looked up at my memory board and said, “You’re killing me Vince. I am way too hormonal to handle this right now,” and laughed.

Vince was very special to me, beyond special. And I miss him. But, I know he speaks to me still. If I’m paying attention, and I slow down to look and read the signs, he is here still, always advising and encouraging me to keep my head up. Kid.

My only regret is not writing stuff down, the details of his life. I always feel like I owe him a place in these stories I write. I always hesitate because I struggle to remember the details.  Everything from that time is such a blur that I forget, like his mother’s name. But I think he knows I got the essence of it all, I was paying attention.

His mother’s name was like satin, and rolled off his tongue. And his eyes were a quiet, clear blue that I could almost see my toes in...

 

 

 

I'm OK with growing old, elastic-waisted pants, and the uncool

I have these little ‘aha’ moments now and then. More specifically, they’re more of 'I’m old' aha moments. So, naturally, I’ve been compiling a list of these moments. Who doesn't record such moments in the midst of work and raising children and going to the DMV?

So,I write them down on little stickie notes when they hit me. I'm not totally sure WHY I feel the need to record these moments, but I do know that I love lists, AND I’m constantly grappling with the realization that I'm getting old. The older me fights the once-so-certain convictions and preconceived notions of the younger me. We are constantly wrestling with each other.

My life is a mental iron cage match with the younger me. And although I’m probably not as strong as I was back then in some ways, in most ways I am stronger now-the older me wins every time. So here they are-these were my old aha moments that made it onto my stickie notes:

I have no idea what channel MTV is, or VH1 for that matter. MTV was my life. What happened? That’s what ‘I did’ growing up. And when I REALLY matured, I transitioned to VH1. Now, I have zero idea what channel these are on my cable channels. The other day I was frantically searching for Caillou and bumped into MTV and was like, “OMG, MTV! I forgot about that! When did MTV stop being my world?” Long story short, when I had children.

For the record, music is still important. I’m just not that big on trends and clothes and rock music fashion. I sing folk songs with my kids. Many of my friends are muscians. We watch live music all the time. So, what’s my point? I’m still cool.

I get the whole ‘sneak candy into the movie theater’ concept now. I took Zoe to Pathmark to get Sour Patch Kids before we went to the movies the other day. I think she looked depressed over the whole smuggling candy into the movie's situation. In my head I was having flashbacks, images of Eddie Murphy Raw were flashing through my mind. More specifically the part where he talks about how, as a kid, all he wanted was a McDonald’s burger and his mom refused to spend the money. Instead, she made him this big, homemade, bloody meatball burger on bread (and it got all doughie and pink).  

Crap. I don’t want to be a sucker and pay $6 for a small pack of Swedish Fish, but I don't want to be that mom either. So, we made a deal, we would smuggle in the candy but buy the popcorn. Child size.

Friday nights mean nothing to me (or Thursdays, weekends, or summers), like they did as a kid  and through college. I was tutoring a student Friday night and there was this ruckus going on outside. I asked her what it was and she said, “It’s Friday night! Everyone’s always out and hanging out on Friday nights.” Oh yeah, I remember those. Fridays! Fun Fridays! I am totally old. By the time Friday night rolls around I’m exhausted. The perfect Friday night would involve take out sushi and sleep by 7 pm.

I get the whole ‘plastic on the furniture’ thing too. We recently reupholstered our dining room chairs. My sis and I thought we were genius when we thought to buy a plastic shower curtain and fastened it over the fabric because my kids destroy everything. If my son kisses me he leaves a chocolate grease stain on my cheek. My sister was genius!

It wasn’t until later that night as I was falling asleep that I thought, “Holy shmolies. I am way too excited about plastic furniture. I am my Aunt Millie!” She was my lovely, old-school Italian Aunt. So be it. I’m honored.

I wanted a cast iron pan, and furthermore, I wanted to marry my husband all over again when he surprised me with one.

Black licorice jelly beans are my favorite. I pick out all the pastels in my kids’ stash and throw them away my children aren’t looking.

I don’t run if I don’t have to. Even when I was running long distances, it was to satisfy this need to be fit, to lose weight, to be strong, or to get a medal for proof. Now, I watch my kids and am always perplexed at how much they run, like for no reason. They run when they are excited. They run when they are scared. They run to me when they want to be held, wrestle, cry, hug. We were walking down the street the other day and Zoe goes, “Last one to the corner is a rotten egg!” and took off like a bat out of hell. How often do my friends and I do that? We don’t. We, umm, eat.

I don’t sleep. As a kid I would, ideally, sleep until 11. I can’t sleep for more than four hours at a clip. My mind is always reeling. I have to pee every hour (that’s an old thing too, no?). Even on days when I have help and need to lay down, I can’t. My body and my mind keep on keeping on. So I will lay, but I will have an iPad, an iPhone, and a TV on.  

I had a mammogram. Mammos were something ‘older’ women did. I just had my baseline at 36. I went in there feeling a little old. I left there feeling empowered. I did the right thing. You should too.

I used the following terms and/or phrases: Slacks, youngster, ruckus, and ‘wait until your father gets home’ and 'Because I said so'. Yikes.

I’m not cool. I was kidding when I professed to be cool. I wear elastic-waisted pants when no one is looking. And I’m OK with that, which in turn, makes feel good. Or proud. Or calm. Some combination of all three of these words.

Cool. I think that is the biggest distinction between then and now. I spent my youth trying to be cool; handing my heart to cool kids, cool boys, who truly were not worthy of handling it. Cool was unkind. It was impossible. It was jealous and spiteful. Cool was so fricking self-destructive. And exhausting. As a grown up, I have zero interest in being cool. It’s uncool. And I am way ok with that.

As a youngster I saw life only at the surface, through a superficial lens. I don’t mean to undermine the importance of the young angle, but I see things on an entirely different, deeper level now. Maybe that is why we attach the word ‘growing’ to the word ‘old’? The lessons I gathered from those experiences didn’t come to me then. They came to me after. A direct result of ‘growing old’.

Now, I understand what it means to earn my money (despite exhaustion). So, I don’t waste it. To the young me, it was embarrassing to sneak candy into the movies. To the old me, I see what my parents did to put me through private school and then college. I hope to do the same for mine.

Mammograms, maybe I saw 40 as old back then, but right now, from where I stand, I realize how truly mortal I am. When you are young you truly believe you are immortal. I used to not fear flying because I believed that even if the plane crashed, I would live. So I wasn’t afraid (for the record, most of the time I wasn’t flying alone-way to consider life without your family, jerky!?). As a grown-up, I see that I am mortal and I take that with me everywhere. From flying and mammograms, to cast iron pans.

Some of the fear I could do without, but in terms of my health, it serves me well. And fear of all the other goodies, like sickness and death, well that is where my faith comes in. For the record, sometimes I feel like being a Christian is super uncool, but I understand where and why that may be.

Growing up and chasing cool is exhausting; surrounding myself with people who inspire me, who are totally comfy with things like my elastic-waisted pants or my faith, or my sometimes limp, is uplifting. So many people are so gosh darn cool. So is not being angry. I’m a lot more forgiving of myself and others the older I grow.

Old is good and calm. It's black licorice and babies in my bed. Old is changing and shifting definitions and direction; beauty has very little do with looks. Old is serving, despite exhaustion. It’s growing and forgiving.

Old is the smell of my Aunt Millie’s ‘fancy room’. Old is remembering how she’d let me fondle her antique typewriter on the back porch, while singing the alphabet. It’s a whisper into the wind, “Thank you. I remember…”

Old is using an expression that used to exasperate me when I was on the hearing end in my youth, and suddenly feeling like it is my mother’s arms extending to my children. It’s endearing and comforting, never annoying.

Old is so much more meaningful. I’ll treasure my youth and my memories and my lessons, but I’m so much more comfy the older I grow, and I'm pretty sure it's deeper than my elastic-waisted pants. I’m OK with growing old and elastic-waisted pants. It’s not as cool to be young, to me, anymore. I’m cool with growing old.

 

United Healthcare, Tysabri, and me. Do health insurance companies care?

Choosing to go on Tysabri wasn't, well, a choice. In fact, Tysabri scared the bejeezus out of me. It was a last resort. It was lauded as being a miracle drug. People who couldn't walk as a result of their Multiple Sclerosis, finally could.

But there was one small glitch. Some people developed PML. In layperson's language, PML is when your brain cells die. The patient either died, or worse, they remained in a vegetative state for the remainder of their lives.

I was just diagnosed with MS, January 13th, 2009. My baby boy was 6 months-old. My baby girl just 4 young years. Tysabri and PML were not an option. So, instead I did what everyone swears they never could-I chose daily injections.

They sent a nurse to show my husband and I how one injects oneself. They suggested to rotate spots because your skin gets hardened when you inject the same site every time. They even gave us a hella big magnet for my refrigerator that very colorfully outlines the exact spots you may want to inject with a space to note where you injected last so you knew where to rotate and when. Fun.

So, that's what I did. Surprisingly, the stomach is the easiest place to inject, especially if you just had a baby. I thought for sure it would be the bum region. Nope, I always went for the belly. And the leg, which is part of the rotation, I never went for. I don't have much fat on my legs. And I like my legs. Injecting leaves them scarred. They will tell you it doesn't, they lie.

So, that is what I did. And I continued to get sicker. They kept saying Copaxone takes time; 8 months at least. So, I kept holding on and dreaming of the day I would feel normal again.

Lesions. Let me go back in time and explain.

After my doctor discovered the lesions on my brain, he ordered an MRI of my spine. I walked in, almost cocky, to gather the results. In my head I thought, "Well, the worst is over. We already know about my brain. What can be worse than lesions up there?" I knew by the look on my doctor's face when he walked in that I should have never ever dared to think that. Dag.

He said my MRI was 'troubling' and we needed to talk. I love my doctor. He has a lovely bedside manner. His sister went to Mt. Saint Dominic Academy in Caldwell like me. His dad sits on the board. He carries a prayer book and rosary beads in his pocket. He's constantly tucking them into his pants pocket-his pinky ring shines. All these little things add up to why I chose him, but the biggest thing is that he cares. When I cry, it pains him.

So he told me my spine is riddled with lesions.The problem with this is that in your brain there is room for error. It's big enough. But your spine is as wide as a Sharpee, one error there can render an entire quadrant of your body useless.

So I sat. I did that thing where you try not to cry but you end up doing a hiccup hyperventilating, lower lip quiver thing. Finally, I just let go and cried.

The doctor I saw before Anselmi never thought to look at my spine. He acted like I had little more than a cold. He was smug. I knew what I felt deserved more weight than that, but this was a smidge too much to the other side of the MS spectrum. I didn't want to have a discussion about wheelchairs at 34.

Anselmi was concerned because I was leaving for California in a few months to visit my husband at the U.S. Open. "Jamie, I don't want to get a call that you are in a hospital 3,000 miles away and you can't move."  That was when I knew what my MS looked like.

People always tell you what their aunt's MS looks like, what their sister's looks like. My sister has MS. I saw hers on a daily basis. But this was mine, and to me, it was the ugliest face I could ever imagine.

I wanted to play with my children. I wanted to run more marathons. I wanted to participate in life. All of a sudden my future began to look like it wouldn't hold any of these things.

Anselmi was always surprised that I was still moving. I went to California and made it home OK. I still woke at 4 am to write and was at work by 7:15. But my body was shutting down. My legs stopped walking and my gait was reduced to a slow shuffle. I would step forward in the hallways and grab on to my colleague feeling like I was flipping backwards, when I wasn't. My colleague would jump. I'd be embarrassed and retreat to my classroom.

My weight fell to 106 pounds. I couldn't muster up the strength to do very much. Even eating was an exercise that my energy depleted body couldn't afford.The quality of my life plummeted. I was hooked up to steroid pumps at home at different periods to help stop the inflammation in my spine, but getting off of them was hell.

I took a vow to never do steroids again. If I go blind (Optic Neuritis), I will, but other than that, no way.

A year after my diagnosis I was tangled up in another exacerbation. Anselmi suggested we take blood and see if I have the JC Virus. The people who developed PML from Tysabri all were positive for the JC Virus. If you don't have it your chances of developing PML are next to nothing. My tests came back negative. I was starting Tysabri in three days.

Tysabri scared me, but I was barely living. I was holding on to things, holding on until I got home, even in bed I was holding on to the hope that someday I would be able to participate in my kids' lives. My life sucked.

It didn't suck in one sense-I had a beautiful family, a husband who rocked, two careers  I loved, but with the MS I couldn't partake in any of it. It was like having this big, beautiful coconut layered cake in front of me that I couldn't eat. Torture.

So, Tysabri it was. The monthly infusions changed my life. I could move again. I could get through the day without sleeping on my desk. But the thing with Tysabri is that it wears off. So, the first few weeks you feel better, but the week before your infusion you start to go downhill again. Maybe that's a gift, a monthly reminder of what my life used to be. It kept me thankful for my treatment.

So far I've had 15 infusions. United Healthcare has covered them, without a problem, until infusion 12. Such an arbitrary number, no? For some reason the last three they denied payment. So, my doctor's office inquired. They said they needed certain verification. We sent the verification. No word. No money. We even have proof that we sent all information that they required.

Tysabri is $8,000 per infusion. The doctor gets $3,300 from UHC. Someone eats the other $4,500. Hmm. Last week my doctor asked me to call. It was a last resort. So I called and the woman was so kind. She said that being sick was all I should have to worry about and that she would fix it.

She transferred me to another woman, and we got my doctor's office on the line at the same time. She said they were backed up, it took two weeks to get the info from that particular fax number. So, she gave us her direct fax. Problem solved! Right?

Nope. Yesterday, my doctor's office called. United Healthcare will no longer pay for my Tysabri due to 'insufficient information'. Three hours she was on the phone and ended up with a man in India. He hung up on her.

He had no idea what the service was that he was telling her to appeal. He told her there was no other option and, "No, she couldn't speak to a supervisor." And then click, he hung up.

I don't mean to digress, but I used to hang up on my mother when I was a snotty prepubescent kid. Who the heck works at an insurance company and hangs up on the doctor's office?

Tysabri isn't something you can stop. It is a maintenance drug. The office manager asked the guy if he understood this. He said, "Yes, she can't stop the service. He had no idea what 'the service' was. A flu shot? A pap smear? No idea.

I asked my doctor not so long ago what I would do if I wanted more children. He said, "Jame, I'm a Catholic, I'd tell you to have more kids."

So I said, "Can I continue with the Tysabri if I'm preggers?" "Oh no," he said.

"So what happens when I stop," I asked.

"Well, I only had one patient go off due to pregnancy, she went blind. You'll go into a severe relapse."

Alrighty then.  I can't stop it or I will, undoubtedly, go into a severe relapse. I will, undoubtedly, not be able to take care of my children, let alone participate in their beautiful little lives.

Why would an insurance company, that I pay into, allow somebody to start a maintenance drug and then pull the plug on it, leaving the patient worse off than they were before they started? Isn't that why we went through the preauthorization process? It was approved and United Healthcare agreed to cover the infusions at 100%.

Why does United Healthcare have insurance reps in India that hang up on people and have no idea what the 'services' their clients are disputing entail?

My friend is on Tysabri. He also has United Healthcare. His last treatment was held up because, according to United Healthcare, they were backed up. His infusion was a week late. Another person, with United Healthcare, is infused right next to me every month. They haven't had a problem.

So, are you backed up? Did someone mislead you as to what Tysabri treatments entail? Were the nurse's notes not enough? Everything is meticulously detailed and has been faxed approximately twenty times? Why do others have zero problems? Why does my health depend on who I happen to get on the phone?

Time. Time flies as you get older. It flies when you have kids and work. It flies when you are sick and you only have so much time to get everything done in your day before your body bonks. It is, at the risk of sounding dramatic, precious. Some people have very little time to waste.

I can't help but wonder how much more of my precious time United Healthcare will take? If they ever pay for my infusions, will they also pay for the hours they took from my life and my kids and my doctor's? How will you compensate for that?

*Since this article was published on nj.com Ive received an overwhelming amount of support, from friends, colleagues, and strangers who intervened on my behalf.

Senator Frank Lautenberg was one of the many lovelies who spoke out for me and my health. Thank you. While I am grateful, I can't help but wonder why it took a story, a platform, thousands of pageviews, a social media shit storm and a senator to get the care I was promised.

But furthermore, I want to say this, because I happen to have health coverage and I happen to have a bigger platform than some, does not, should not, make me any more privvy to proper health care coverage/treatment than those who do not. Every person deserves fair and equal health care coverage.

My heart (and my platform) goes out to those who fight sickness daily, and who are not 'entitled' to the same care I am because they cannot afford to 'pay into it'. If I can help you, please let me know.

I cannot. I will.

Today is one of those days ‘it’ hits me.  I can’t ignore the lesions. I cannot will it away.

My legs disintegrate into quick sand on the hard wood floor. They struggle and wobble, searching for their rightful place. Days like this, they simply don’t belong. Anywhere.

I will them forward toward my son; his Star Wars hand-me-down shirt in hand. I WILL get his shirt on, even if it kills me. Days like this every small ‘thing’ is a mountain. I have climbed about 20 so far today and it’s only 10 AM.

I tell myself, “Just focus on this mountain in front of you, don’t look to see how many are hiding behind this one; take it one mountain at a time.”

I wonder if I would have any will, had I not had children. Having Multiple Sclerosis and the threat of paralysis hanging over my head doesn’t really inspire me much. Big things like that used to piss me off in a self-destructive way. I would simply get pissed and quit.

BUT, when you have children, especially small children, you have no choice but to go forward, with or without the use of your legs. It’s automatic. It’s reflex. If I had to shuffle on my stomach liked a beached whale, arms like paddles, I would.

Thank God for them, and for the infusion scheduled for  tomorrow.

Marriage, dancing in mine fields, and Stacie who married young...

"Poets claim that we recapture for a moment the self that we were long ago when we enter some house or garden in which we used to live in our youth. But these are most hazardous pilgrimages, which end as often in disappointment as in success. It is in ourselves that we should rather seek to find those fixed places, contemporaneous with different years."

-Marcel Proust, In Search of Lost Time

 

All these things I’ve ever written about little whispers of confessions and struggles with love. How we struggle with our partners and question our destinies.  How we, no matter how old we are, continue to wrestling with ‘what if’s. They seem to move in like old lost family members who have been displaced. Just like every family has one of those, every head has a 'what if'. Normal.

My 'masturbation and other honesties' post was about pain and insecurity. It was about the holy few who refuse to admit that they ever have moments of doubt, in any thing. I wrote it in five minutes out of anger.

Gloria Steinem said, "If you are going to be angry let it be constructive." That was the only constructive way I could tell certain perfect puppets to go jump. But, more importantly, to let people know they aren't alone. Everyone goes to those places. We are peeking over picket fences, "Whoa, look at the flourescent green grass they have on that side." OR, they, we, are peeking on the past.

The past is a sneaky, slimy thing. Don't be fooled. There's another side to all of this. Walks down memory lane tend to be romanticized. That is the danger of giving too much power to the past. We forget all those dangerous details that colored, like George Seurat in tiny little dots, those relationships. The greater the distance between then and now, the more clouded we tend to be as we look back.

We forget the pain and the reasons why things didn’t quite pan out the way we planned. We forget WHY we abandoned those routes for new ones, lined with possibilites rather than dead-ends.

  We wanted different things. Important things, like kids.

He never grew up and couldn't put down his game-boy and his joint long enough to look me in the eye.

He made me feel dumb and ugly. 

He didn't love me HARD the way I loved him. I deserved someone who loved me as HARD as I loved them.

Some of my friends got married, denying their sexuality. It caught up and they were brave enough to leave. Brave enough to say, "I made a mistake by trying to fake it. I wish you'd understand, but if you can't I'm OK with that too." Lies like that are all-consuming; a slow tortured death where you are supposed to fake it and smile. Some of us need to reassess and get gutsy and move on becuase you can't, no matter how hard you try, outrun who you are.

But for others, the roads we have chosen are hard, but a different kind of hard. It's the kind of hard where life gets in the way, chaos and tragedies and sickness. It is life. You could change course, but it doesn't mean that course won't be riddled with bumps and forks as well. You can't outrun life.

Difficulty doesn’t diminish the significance, the choice of where you are today, or the direction you are heading. My 'what if' post was not telling you to run. My deepest apologies if that was the mixed-message I sent you.

My father always said, when I didn't want to go out for a run, "Jamie anyone can do something that is easy. Extraordinary people, really successful ones, make themselves do the hard things too."

  Everything in this life worth anything is hard and worth fighting for. Like marriage and equality or your dreams. None of those things will ever be handed to us. You have to fight and you have take them.

My friend Stacie married at the tender age of 19.  The priest balked at the marriage and advised her against it. She fought for it. I remember her telling me that the wedding was somber. Her priest treated her marriage more like a funeral,  a half-assed attempt at a celebration by a priest who  didn’t feel comfy presiding over a marriage that, in his eyes, was doomed. I’m not even sure if he told the groom to kiss the bride after they made their vows.

Fifteen years later, she still fights for the man she chose despite the naysayers. She has two beautiful blonde sprite-like beauties that are little replicas of her. They are gorgeous. Same man she fell in love with then, she loves and fights for now. Does she ever wonder about other roads now and again? I’m sure she does.

But she keeps her promises no matter how bumpy the road gets. She keeps her promise.

This song reminds me of Stacie, and all my friends who keep their word despite the bumps. Marriage and kids and frienships and promises get hard. The beauty lay in the continuation to fight these little battles that come with age and marriage and children, the grace with which Stacie fights to tend to a sick child. The courage she exhibits as she begins a career in her thirties.  

 This song makes me think of her and the commitments we make and the battles we fight as we grow older to keep those promises. It makes me celebrate the people and the marriages, that learn to dance in the mine fields.

I was was surfing the channels last night, watching the gazillion shows on wedding dresses. The prominence we bestow on the spectacle of the wedding. It made me sad. How many of these will last?  If we focused less on gowns and thousands of dollars spectacles, and more on the art of dance in the mine fields with our partners, gosh dammit how many joyful marriages there would be?

And weirdly, or maybe not, I keep going back to my friend Robyn. Some of us have friends who, for watever reason, committed to us years ago. Friends that took a silent oathe of loyalty and never left-no matter how many kids, moves, or men came between. This song is for Stacie, who keeps dancing, all these years later. And for my dearest friend Robyn who knocked on a stranger door years ago and asked me if I wanted to run.

Ben Breedlove's dad writes me...today is the day the Lord has made.

Ben Breedlove. The beautiful boy who posted a video about his heart condition and his brushes with heaven. He had four of them. Four heart-attacks. Four brushes with the eternal. The 4^th took his life on Christmas Day.

I read a lot of tragedy these days. I used to report a lot of those tragedies on nj.com, if there was a parental guidance angle. I stopped writing about those kinds a year ago. You can imagine why? Some stories once you open them, can never be closed.

The little girl from down the shore, her dad had visiting rights. Angry with mom he takes the precious two year-old and flings her, still strapped into her car seat, into the river. I say fling with purpose. Maybe you fling an OBJECT across the room. This was a child, his child. He threw her to her death.

I can never get that back. I can never shake that off. She haunts me. So I have to try my hardest to know when to open and when to walk away. Maybe Ben won me over with his good looks. He’s got that Justin Beiber thing going on, only Ben's smile is better (Sorry Beibs). And then he starts telling me his story on video with little handwritten cards. I read each one carefully. I started to get a little weepy. But Ben is smiling. Smiling.

And he’s talking of death and light. Heaven and Kid Cudi. He’s talking about fear of living now that he’s had a brush with heaven. He’s talking of feeling proud of his good deeds. Will I be proud of mine? What have I done? This boy, I know how this story ends before I even begin, it’s in the title. He dies. But holy cow this isn’t a tragedy. This is a gift. I weep a little. Get on my hands and knees and pray for Ben and his family.  Thank you Ben.

I watched his older sister Ally on video. She’s equally as stunning as Ben. It was at his memorial. One night she came  home from college. Maybe for a week. I don’t remember. But she couldn’t find Ben. At 4 am she finds him out by the dock on the water. He is sitting and staring. She asked him if he was ok. And, as gently as he could put it, he told her he felt closest to God at these moments. Early morning and water. And then he cried because he wanted to go back. She cried and begged him to stay, as long as possible Ben. Please don’t leave us.

I’ve been walking around with Ben for weeks now.  One morning, a couple weeks ago, I checked my blog fan page. Two messages:

Please take my picture off your Pornstar in the Classroom Story on nj.com before I sue you. Yikes. OK. I had the rights by the way. And then this,

Keep your head up kid. I like your style. –Shawn Breedlove (Ben’s dad).

A wave of chills hit me and I sat and stared at it. I cried and smiled. It was one of the coolest things I’d ever seen. And don’t believe my children, I'm a collector of cool. I know a cool thing when I see it. This was beyond cool. Ben’s dad out of all the stories that have been written, saw mine. This kid’s video went viral? That means that there were a million stories out there on Ben. And his dad found mine. And then my blog.

If you’ve read my story about Vince, you know the significance of those words to me…keep your head up kid. I jumped out of bed. And I wrote him an inbox. The gist was thank you. He had just lost Ben and he sought me out to make me feel better. SO, I wrote him some blubbering inbox. This morning I got a response.

Disclaimer: I could have written this for nj.com, but something in me feels like I might be exploiting something personal between Shawn and I. Sharing his letter to me, on my little old personal blog feels right. My closest friends and family read this blog. Not many beyond that. Well, except the masturbation and other honesties blog , but I am convinced it is because I used a naughty word in the title.

Shawn’s letter to me:

Jamie, I wrote you that note because your blog was one of the most thoughtful I had seen. I understand your struggle from a parent's viewpoint, and your writing is drenched in the extra sense that you have due to your struggle. Ben was friends with atheists, drug users and other messed up kids because he could relate to their struggle. He did not judge them.

As I read your blogs, I enjoy the raw honesty and truth that you share....and may I add some of the same?

I would like to leave you with a personal thought......one that we had to live by every day because we never knew what tomorrow was to bring.........

"Today is the day the Lord has made, rejoice and be glad in it". We are not overly religious people, but we began to understand that God is good. We began to thank Him and to consciously enjoy each day we had with Ben because it made every single day another great day in this life. We have no regrets for the wonderful life Ben gave us and the wonderful life he is living today....on the other side.

It is hard to believe that God or heaven is real when you lose a child, but our only alternative was to cling to a dead body.......the choice was very easy after just a few moments of doubt in the emergency room. Ben gave us plenty of reason to believe that God's peace and heaven is real, having struggled with the fear of dying for some time. He shared things that he would never have shared had they not been real. He was too skeptical to believe untrue things.

So, we walked in fear too.........the fear that we would prematurely lose our child, and I can't imagine what you must feel as a result of your diagnosis. I will pray for you, that you can exchange the doctor's diagnosis for the joy and peace of God in each day that he has made specifically for you.

Your blogs are proof to me that you have a lot to share with this world similar to the way that Ben did. So, keep your head up kid.....God wants to use you in a big way, and he will reward you for diligently seeking him. Love,

ben's dad

So why did I have to share this at all? I had to share this because of the lessons that lay in Ben’s life. In Shawn’s. In the Breedloves. I don’t believe it was a message that should lay in an inbox between friends. It a lesson that needs to be viral.

Today is the day the Lord has made, rejoice and be glad in it.

 

What if...masturbation and other honesties.

What if you admitted to everyone you know that your life is just a series of ugly, cold moments with a man you now realize is made of stone; a marriage that you realize, a few years and a few kids down the line, was a mistake?

What if you admitted to standing by the water cooler at 3 p.m., daily, contemplating other worlds beyond the one you seem so concretely stuck in right now? What if you could lift these feet and chase after your dreams? What if you could rock those cinder blocks like a pair of racing flats and take the fuck off?

What if you really told someone about the ‘secrets only car windows will ever know’? Chris Trapper posed that question in a song, Feelings Without Weight.

What if we all posted Facebook profile pictures of what we look like, first thing in the morning, before we step foot out of bed?

What if you told the truth about your addictions? Popping pills and losing jobs. Cursing God. Sleeping life off? Could you ever be redeemed in ‘their’ eyes. Those people, you know, the perfect ones, the ones that are monogamous workers with awesomely manicured lawns?

What if, for one moment in your life, you focused on you, and wellness and told those people to fuck off, if only in your head? What if you finally focused on letting them go and refocused on YOU?

What if you let someone get really close up? I mean close enough to count every single large pore on your shy face? So close they could smell and name the toothpaste on your breathe? What if you let them see the scars, the red ribbons of battles that have risen? What if you let them roll their fingertips, slowly and gently, over each and every one to FEEL them from the inside out with the lights on? Unabashedly.

What if you were honest and updated that if you had to do it all over again, you wouldn’t? Not a damn thing. And used an exclamation point to punctuate!? Wait, and you told your partner too!

What if you said proudly that you were the reason your life didn’t quite pan out the way you always imagined it would?

What if you came clean and told her you lost your job months ago and you’ve been hanging at the library, pretending to be at work?

What if you admitted that he cheated on you, for years and you still (gasp) forgave him? What if you stood up in front of a church full of people and said, “Well, I said for better and for worse. Why is that a deal breaker when that is the single most human, easiest of mistakes to make?” What if you walked out of that place, head held high and smiling?

What if you admitted, if even to yourself, that you fucked up and chose the wrong one? What if you had the strength to leave in search of the one?

What if you got really honest with yourself and looked in the mirror and admitted that you are, quite possibly, the world’s most boring know-it-all of a person? What if you then admitted that that, in turn, makes you ugly as well? Hallelujah that would be so awesome.

What if you had the balls to say everything you meant with all your heart and you shouted it from the rooftops, with reckless abandon?

What if you were honest about motherhood, like how you felt something was ripped from you that moment she was yanked out? Like how it had very little do with wanting to feel MORE connected-not so much in a reinstating the umbilical cord way-but rather it was all about wanting your youth back?

What if you told everyone that you are lonely and wouldn’t mind disappearing?

There are so many things we aren’t allowed to share. They are hushed. They are inboxes between giggly gossipy girls, “Oh my gawd. Did you read her status? TMI.”

Honesty. Quite honestly, I feel it is craved. And I feeI it is desperately needed. So many people are suffering, from so many different angles in life. Yet all we do is wax philosophical from a blurry distance. We get political and far away. We make bold proclamations and isolate others. Or we pretend nothing is wrong and perpetuate our own isolation.

There's a fine line between discretion and not talking at all. Between confidence and a lie.

I’ve never been attracted to perfection. And it isn’t because I’m insecure. If I was standing next to Miss Universe of Perfect Lives I wouldn't fidget and squirm with insecurities. I wouldn’t feel ugly. But I’d squirm just the same out of a case of the  ‘I don’t get it's and the 'You Lie's. I would laugh in contempt.

I don’t connect to perfect people because I’m so incredibly UNperfect and fucked up in my own glorious little way. I fumble through these halls and other people's honesty helps me find my way. So when people 'fake it', I don't appreciate it.

Eh, you do too masturbate Marky Mark. I don’t believe you.

And perfect marriages without any conflict? Bullshit. She undermines your parenting skills. Or he is always out exploring while you are, surprise, home again. But, oh yes, he is the bread winner. You stay home for 120 hours a week, taking care of the kids and the house without any pay and only enough time to shave one leg a day (if you are blessed with time enough to shower).

Betty Crocker Sue Whatsherface of a Mom, yeah, maybe sometimes, but I bet more often than not you are too tired to cook. Or she scraped some crusty car change together to buy her two kids one Happy Meal to share. I bet you worry about the quick side conversation you had on the playground with your kid's teacher. Your son, classified, special needs? But I'm so smart?

There are no perfect parents or marriages or persons. Everyone struggles with loss and loneliness and aches and pains. Everyone gets the ‘what ifs” sometimes. And everyone, whether you sleep in a bed filled with kids, a hubby, and a cat or you sleep alone on a couch in your apartment, feels alone at some point or another.

I was with my dear friend Johnny the other day, helping him say goodbye to one chapter in his life as he opened the next  great chapter. As we were rummaging through his stuff he asked why I called this Ugly Like Me. This blog is a response to that. I see how many perfect pictures people paint of themselves, me included, on this great universe of social networking.

I explained to him how, at first, when I logged onto Facebook I felt a little weird, a little less. “Everyone’s so perfect, wow.” But the truth is, as my relationships on here have grown I've come to understand that, everyone, in some way or another, is ugly like me.

 

 

Kill your darlings...pictures and lessons and words

I’ve been thinking a lot about pictures. And the images I choose to accompany my stories. A story doesn’t feel complete without the perfect image. Like a trigger on a gun, it is next to impossible to force my finger to click publish without the right image. It feels like I'm killing something.

I was thinking last night about how my words come first and the picture comes second. So, I wondered what if I had the pictures first. Could I tell a story with these pictures I, we, share on Facebook and convey a theme. Could I learn how to make it into a movie, with music, and captions?

My friend Elizabeth once told me about a writing teacher, Wendy Palmer, who spoke about how hard it was to edit your words. To take things out. She referred to it as  killing your darlings. And Wendy pants actually borrowed that phrase from William Faulkner. I found this fascinating, and true, to an extent.

Like any living thing, I am always evolving. My words change and edit themselves. This is the fascinating thing about blogs. You can publish and the edit and revise and republish. It's a body of work that is never done. I'm not entirely married to any of my words. Or mother to them. I can let them ago. Knowing which ones are dispensable is the trick. But again, I can bring'em back if I so choose.

That said, holie shmolies I felt Faulkner's vibe so much more deeply when editing pictures in this little video ditty.  Removing pictures of faces and people I love was so much harder to me than cutting my words ever were.

I'm always so surprised how full circle my life has come. It hit me sitting at Chili's with my friend Kristin from 3rd grade. Her sister taught me to shave my legs. Now, 30 years later, we sit in a Chili's and talk about marriage and the loss of a child and love and potato skins. After not seeing each other for 20 years in between. And in this movie with her little boy Michael.

People from 20 years ago have come back into my life in a very significant way. My friends are very supportive in a direct way, but they support me in other, more indirect, but just as important ways too. They live in such noble ways, even under the most horrific of tragedies. The manner in which they choose to live, inspires and teaches me. Those are the images and the pictures I try to capture. Whether it be via pictures, or words, or my everyday actions.

Turns out, having the pictures first was easy. For the sheer fact that I know my friends and their stories. They were already written.

Bucket Lists. Leather Pants.

You might have read that I was asked to speak at The Jessica Fox Foundation Dinner-Dance. And, if you know that, you probably know that I am close with her mother, Rainy.

We spend every Wednesday together, cooking and talking and laughing. No matter how distracted I get, whether AJ just spilled a gallon of milk and I am cleaning it up, or something blows up, my ears are always turned up and tuned in to the stories she shares of Jess.

Two days before the dance, September 24^th, Rainy wrote on my Facebook wall, “Looks like you are up Jamie girl.” I knew what she meant and I was praying I was wrong. “Oh, did a speaker fall through for Saturday?” “Yep, so it’s all you,” she replied. "Fuck," I thought.

I shared my hesitations with Rainy and she said, “I believe this was Jess’ doing. She wanted you to speak.” I don’t know who on God’s green earth could say no to that.

So I struggled and wrestled with what I could possibly say and share with this crowd who knew her so intimately. I never knew Jess while she was alive. I was speaking to 80 people, most of whom knew her well. They took her on cruises when she was depressed and made her ‘play’ with boys. They traveled the world with her, from Holland to Brazil. After she passed they spread her ashes all over the world; from Thailand to the Vatican. Who was I to speak to them about her?

My second reason for hesitating was that I in no way compare myself to Jess. I know Rainy does and that’s why she asked me to speak. And we do have some similarities. Jess was 36 when she died, I am 36 now. We were both teachers. We both ran marathons. We both LURVE Rainy. And we both struggled with sickness.

That being said, I have never faced the monster that is Triple Negative Breast Cancer. Jess ran the NYC Marathon for the second time, and AFTER the cancer metastasized to her lungs. She beat her previous personal record by 30 minutes. She was daring and strong and courageous and adventurous. The closest I have ever come to those things involved alcohol. I didn’t want them to think I was comparing myself to her. How arrogant would that be?

So I got up there and I shared with them those two big fears of mine. And then I explained that I made peace with talking to them when I realized how much they have been through with Jess-they fought beside her the entire way. They were beside her when it got ugly and the cancer spread to her brain. And many were there when she took her last breath. I thought maybe I could share with them what she has lent to me through Rainy and our days together. Maybe I could tell them how she speaks to me now, after her death, without ever knowing her-maybe in some way this would comfort them?

I once asked Rainy to tell me the one thing she wanted people to know about her daughter and the one thing she has learned as her mom. She said, “Jamie, my daughter was no saint. But I watched her fight like hell to live her life. She fought fearlessly. She had blood and guts written on her wrist. If she saw me wasting my life after she fought so hard to live hers, without fear, she would kick my ass.”

This is what Jess gave me. I wasn’t afraid of MS until my doctor brought up the wheelchair possibility and said that could be a possibility within three months. All of a sudden I was panic-stricken.  I went from moments of heightened bravado to profound panic.  I rested on my faith to straighten these emotions out to a more even, quiet type of acceptance. God answered with Rainy. God answered with Jess.

Many people can be sad and weep at the death of anyone, whether they knew this person or not, because it reminds them of their own mortality. Jess was special because she was able to overcome this—the story of her death didn’t make me fear for my own life, it dared me to live. WWJD. What would Jess do if faced with life in a wheelchair? She would gladly take it, and she would put a pink wig on it like she did when she lost her hair, she would enter the NYC Marathon wheelchair division, and she would kick ass in that wheelchair.

I was looking at Jess’ bucket list the other day. The first thing that stood out was “Buy leather pants.” It was checked off. Whoa. I could never wear leather pants. I mean maybe I could in 1995? Pleather pants may have been a part of my past. But now? Leather? Then I saw the item underneath. WEAR LEATHER PANTS. It wasn’t checked off. Dag. This was Jess daring me to take that on. I need to wear leather pants and help her complete this list of hers. After sharing all of this, I handed out her bucket list and dared her friends and her family, her legacy, to complete this list of hers. I warned them that someone in the audience would have to get arrested.

The night was wild and fun. A total success. Item number 63: Get arrested. Check.

 

 

 

I think it is time to move on...The Happiness Project

I was thinking about how I don’t want to always write about MS. Because this is a blog centered around that, it always comes out. Sometimes it doesn’t even come out so I will go back and try to make some connection to MS and I add it in. The problem with the MS theme is that I always sound pathetic. Or whiny. Or dramatic. I don’t want to come across that way. Hence, I don’t want to talk about MS all the time.

Because MS is the sole focus of this blog, too many it comes across that THAT is the whole of my life. In a nutshell, that is the furthest thing from the truth. It represents a very small portion of who I am. I realized how I am grossly misrepresenting myself in these posts. My life is so full. Of family. Of laughter. Sometimes tears. Love. On the lowest rung of the ladder sits MS. So, why oh why am I talking about it?

Now that I am home, I am constantly with my children. My focus is parenting, and sometimes, but very rarely MS. Watching my children inspires love and laughter, frustration and tears. More laughter. I really think I should write more about this. I said this about a year ago—I don’t want MS to be the big, bold font of my life’s story. So, in keeping with that, I will try to focus more on my parental  journey and less on MS. It can come up, peripherally. That is fine; but no more focusing on it.

Disclaimer. Can I add that at the end? Writing about MS was entirely necessary. In writing about it I learned more about myself. The theme of a story is the lesson learned. It was always very hard to teach my students this concept. Even with myself, when I write, I don’t know what my theme is. Something will be heavy on my heart and I will start typing. Usually by the end, the theme…what I have learned after connecting the dots…reveals itself to me.

In this way, every post I have written regarding MS has taught me something. It has delivered me a little further down the road (in regards to me understanding my disease) than I was before. Also, many of my friends had very little understanding of what MS was, or how it affected me.  I didn’t want to be seen as dying or crippled, but I also wanted my friends and family to know what I pushed through on a daily basis. Living with MS is hard. For the people who suffer with this disease, and for myself, I wanted others to understand. I think I have accomplished that in my own small way.

So  I put it out there. Glad I did. But maybe it is time to move on.

I bought The Happiness Project: or Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun by Gretchen Rubin. Gretchen went to Yale undergrad and law school. She was the editor of the Yale Law Review. She worked on the U.S. Supreme Court with Sandra Day O'Connor. Even her in-laws are accomplished. Her father in law is Robert Rubin. Yes, that one. OK, I admit it, I had to look it up. Former treasurer of the U.S. under Clinton.

One day, on the bus ride across town, while taking her daughter to school, she realized she wasn't happy. She wasn't NOT happy either. She wouldn't call what she was going through a mid-life crisis, but maybe more of a mid-life malaise. She would stress and sweat over taking her daughter to school. Everyday her daughter would take her time, and marvel at the treasures in the pharmacy window. Gretchen would be short and snippy and rush her. It hit her on this bus that this was her daughter growing up. Someday she would be grown and on her own and Gretchen was wasting this time being ungrateful.

This was the moment The Happiness Project was born. After a couple years experimenting with every known scientific, philosophical, whateverical theory on how to be happy, The Happiness Project was published. It has been sitting on the NY Times Bestseller List for quite sometime now.

Like Gretchen, I don't want to waste my time being ungrateful, I would rather spend it on savoring my children. Happiness and how we feel is a decision. Studies say that 50% of how we look at life is genetic. If this is true, there's a whole lot of percentage left that we can control. In many ways we are what we think. And who we surround ourselves with. And what we read. Hence, I don't want to always think about MS. I want to think about how happy I am being mother to these two awesome kids, and wife to (just) one awesome husband. I will let everything else fall in line from there.

Click here to follow Gretchen's blog. Check it out...it is so inspiring. I check it daily now.

Anyone want to jump on board and read this book with me? Oh, and does anyone have an awesome Halloween cookie recipe they want to share?

 

Peggy Sue lost her job. Peggy Sue got her period.

Quickie blog before I head home to NJ from visiting my grandparents in CT. No kids or hubby, just my mom and me for the weekend. Last weekend I came up with my sister. The truth is, I needed to visit them because I am totally bummed about losing my MS writing gig. It’s been a year of writing for these communities; writing and teaching; every day monitoring and thinking and conjuring and writing.

So I’m a little bummed. Hence, I wanted to be with my grandparents. Kind of like Peggy Sue Got Married; how she longed to be with her grandparents when everything fell apart.

Totally me. Except I am blessed, I still have the only grandparents I’ve ever known. The same grandmother that taught me the Our Father and was there when (close your eyes men) I first got my period. Same grandfather who drove 110 miles an hour so I wouldn't miss the deadline to sign up for French summer session in college. All so I wouldn't have to take the longer, harder semester version in the fall that I would undoubtedly fail. So I’ve come to cozy up with them in flannels, drink pumpkin coffee, and watch Diary of a Wimpy Kid on Volume 840. Being next to them makes me feel safe. Safer, I should say.

And something about them completes this feeling of fall. My favorite season and feeling of all. I don't mean the MS fall where you can't find your feet beneath you and you fall. I mean that sentimental, nostalgic feeling of FALL. And the loss of this job, as scary as the uncertainty can be, I get less pouty as the days go by and more and more excited. The uncertainties are giving way to possibilities. Thank you Lord.

I still have nj.com and my little old personal blog, Ugly Like Me. Two days ago I had my 8^th infusion. My health is improving. And Meatball and I are kicking ass on our baby jogger runs. Insert tough guy growls here.  And through all of this, T and I still stick by the no teaching decision. Phew. I’m also happy I ordered the sweater/button Uggs I wanted before I lost this gig.

People lose their jobs. People get sick. I don't ever feel badly about these setbacks because I don't in anyway feel special enough to be above them.Why me? Why NOT me is more like it. No one deserves to be sick. No one deserves the anxiety of not knowing how they will pay the bills and provide for their families. But God has never let me go. Something else is coming, I just can't see it from where I stand. But when I turn this corner I will. It's going to be great. In the words of my hero Mother Teresa, "I know God will not give me anything I can't handle. I just wish He didn't trust me so much."