Ugly Like Me...

Three little birds...a message to me

I’m tired of being sick. And honestly, I am just tired of hearing about sick. Watching people wrestle with sick. Watching some die of sick. So so sick of sick.

I think most people today underestimate stress and its tie to sickness. It wraps us up. It keeps us down. It hog ties us and leaves us in dark places. Being happy and balanced is not a luxury. It should be an allowance. Everyone deserves this.

I have these moments in my life, I always have, where something clicks and I notice that my life needs to change. Some will be like, “Wow. You are nuts!” Others will back me up and tell me I am Yoda. They’ll give me a chest bump and clap for me as I head out, on my way, a new road. One with sunlight and paved possibilities. Where the breathing is easier. Where the journey is just as important and uplifting as the destination. Where I am not tied up and hidden in darkness.

My Dr. called me a few weeks ago after an infusion and said, “Jamie, if this doesn’t work we cannot help you. I really think you should stop teaching and heal. Try to heal. You work in a battle zone. It isn’t healthy.” My Dr. has had to deliver some crazy, scary news to me. We have had talks about wheelchairs and spinal chord injuries.  Things that are truly overwhelming and frightening. But of all the things he has ever said to me, this was the scariest. He scared the shit out of me.

I met with my friend Lorraine yesterday. Her daughter Jess (Jessica Fox) died at 36 years of YOUNG age from Triple Negative Breast Cancer. She ran her 2^nd NYC Marathon 30 minutes faster than her first after the cancer (unbeknownst to her) metastasized to her lungs. Her favorite song was Three Little Birds by Bob Marley. At any celebration, for any accomplishment, this is what they piped through the sound system.

Lorraine was telling me about the day Jess died.The hospice worker came and woke Lorraine up. Jess would be passing soon. So she went into Jess’s room, and climbed in bed next to her. Lorraine lay her hand on Jess’s heart. Skin to skin. She told me she wanted to feel the exact moment her daughter left this world.

As a mother I thought how every mom, if they had to watch their children pass, our children,  go out of order, before us, we deserve at least that. Music was playing in Jess’s room. Of the thousands of songs that came on as Lorraine climbed into Jess’s bed, Three Little Birds was the appointed song of passage, Jess’s all time fave. She didn't put it on, the universe did. The song stopped in perfect sync with Jess’s heart.

Now this is Lorraine’s song. Her signs from Jess have been plenty, but many of them have to do with three little birds and Mr. Marley. I won’t get into the whole story here-that is another one that deserves its own full attention-but I have to share this.

I was at the kitchen sink this morning, watching my son play with the water and the soap and a zucchini that I was trying to juice before he snatched it. The TV in our kitchen was playing. I was in my head, and wasn’t totally present beside my son. I wasn’t even aware that the television was on. I was wrangling and wondering, “Do I stop teaching? Can I survive by writing alone? Does my body truly need this? How will we survive financially?”

All of a sudden I hear Bob Marley, wafting through the kitchen and into my head. My heart. My ears. Full up. Three Little Birds was on…

Don't worry about a thing,
'Cause every little thing gonna be all right.
Singin': "Don't worry about a thing,
'Cause every little thing gonna be all right!"

Rise up this mornin',
Smiled with the risin' sun,
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin'

This is my message to you-ou-ou

I stopped in my tracks and sat on the wooden floor. My son on a chair above me. I was staring at AJ's cankles and smiling. This was Jess and a message to me-ee-ee. Today was a big day. I am not a teacher, I am a writer. Full time. A mom. I will start my garden. And juice. I will read my bible and meditate. I will focus on being whole again.

I kissed AJ on the cankle. Every little thing is gonna be all right.

 

*The picture up top is of Jess and her brother Joe after the NYC Marathon, 2006.

 

 

 

 

 

Gracias Senor Jesus

I went to my infusion feeling pretty good. Usually it wears off by the next infusion and you are dragging your butt into the place. This time, I was a bit more perky and my walking was normal; no awkward-stiff-robotic walking into the place. Walking like that, down JKF Blvd, in Bayonne is most nerve wracking and humbling, to say the least.

I suspect that was because the Tysabri didn’t work right away after my last infusion. I had an infection that was blown out of control by the infusion and knocked me on my butt, for about two weeks. It was pretty awful, but I think what side-swiped me most was that I was expecting it to work ASAP, like it did the first time. I was floored on so many levels, physically and emotionally wiped out. The good news is that after two weeks I started to perk up again and get my body and my strength back.

So I walked into the infusion room smiling. The room where we are all hooked up is very small; no windows, a sink, usually holding donuts and baked goods other patients bring in. There is an old scale that has the same dusty, green bow hanging from the side. Billy, who is sitting next to me, jokes that the scale was a gift to our doctor for healing someone.

There are six recliners, maybe eight? They are mix-matched and look like some well-meaning worker in the office scrambled and looted the curbs of Bayonne on garbage day. I am pretty positive that one was taken straight from Archie Bunker’s Place. They aren’t the hottest, newest recliners, but I appreciate them just the same. Something about the warmth of the broken in fabric; and the broken in cushions I find comforting. It cushions the clinical, sterile blow of being hooked up to IV’s for three hours in one sitting.

My body gets stiff sitting in here, cooped up in one position for three hours and no air. Even the most well meaning eater tends to drown themselves in donuts to make the time pass by. In the beginning I did this so I wouldn’t have to look at the other patients that occupy the seats beside me. The older Spanish man must be in his mid-seventies. Every month he comes with his wife. She pushes his chair up JFK Blvd, come rain, come sleet, come snow, into the medical facility. This tiny, stout, DEVOUT wife of a woman is the most faithful, committed woman I have ever seen.

Her husband’s tremors are bad. His left leg shakes violently, and his right hand, curled up, shakes always. He had an ipod on yesterday; his hand was rocking out to the beat. I wondered what it was that this man was listening to. Whatever it was, it made me happy to watch; to see him look so ‘normal’. With our recliners sprawled out, feet extended on the lip of our chairs, our toes almost touch.

I always try to make eye contact with him. To smile. But he always has his eyes closed. Headphones on. Rocking out. Yesterday, he opened them and yelled, “Audrey Hepburn. She looks like Audrey Hepburn,” with his headphones on he didn’t realize how loud he was being. I was mid donut bite, I undoubtedly had chocolate munchkins in my teeth. I felt embarrassed, and smiled, "Gracias Senor".

My buddy Bill sits in the only chair that isn’t a recliner; his Yankee hat on. Bill is really funny; a wise guy. Every time the nurse takes our temperatures he always wonders out loud, "What ever happened to the rectal thermometer? God I miss those things."

He will never talk about his condition seriously. I asked him yesterday how long he has had MS, and for the first time in the nine hours I have spent with him he looked sober and serious. "1989", he said looking away. I was surprised he had his diagnosis for this long. Men get hit harder with MS. It progresses like a tornado in most men. I told him how well he looks and he smiled like,  "Don’t be fooled."

Later the nurse made Bill get up and roll his IV pole over to the scale. That is when I realized why he gave me the Don’t Be Fooled smile. His legs weren’t compliant. His spine was a sloppy, crooked C. The kind you write when you want to be done with your homework and you are already halfway out of the kitchen. It shifted his Yankees hat to the right. I counted in my head the seconds ‘til it would fall. 1…2…3…He held on to a chair to balance on the scale…he held on to his beloved Yankees hat.  Impressive!

Most of my struggles in terms of my disease are dealing with these people and their conditions; sitting across from them can be challenging. You are forced to be still, and stare (close up) at what your worst-case scenario may be. My Spanish senor friend across from me with the wicked tremors and the wheelchair, is he a glimpse or a foreshadowing of my life to come? For three hours you are forced to be still and stare at the possibility.

Yesterday my fear was replaced with something different. I was filled with light and love and Jesus Christ. All the light and the love and my faith squeezed out the fear. I used to be so overwhelmed with the Spanish senor. The tremors were so big you could almost hear them, it was a deafening noise in the room I couldn’t silence. Now, it is replaced by the awe of this woman who is committed to him. The question wasn’t, "How tragic that this disease has taken over this man’s body?" It was,  "How awesome to have such undying love and commitment in a marriage?" I kept picturing myself in the wheelchair and Jesus pushing me up and down JFK Blvd in 110 degree weather. I would giggle. And God is so giggling with me. He digs my sense of humor.

How many unpaved, uphill roads has He pushed me up? Sometimes he does all the work and I never thank Him. I get so distracted by the view, and my friends that are there. I forget to say thank you Lord. As crazy as it sounds, that was what this infusion was about on Thursday; tremors, crooked spines, and chocolate munchkin teeth, and aging brides devoted to their aging, infirm grooms. I just kept saying, silently, Thank you Lord.

Thursday was such a good day. Thank you Lord.