Ugly Like Me...

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."

My diet and Roger Ebert's face

I haven’t been eating well according to my MS. I’m supposed to avoid yeast, wheat, dairy, gluten, and sugar. And coffee. Yeah. That is a lot. Oh wait, and dairy. I guess the upside is what is the point of dairy if you don’t have some coffee to pour it into?

I stopped eating accordingly about 8 months ago because I was too skinny.  I figured I would eat some burgers and lasagna for a little while and go back, but I haven’t. These types of diets or lifestyles take time. It is a series of mucking up before you get it. You develop a rhythm. And you go on.

That’s why on every weekend when I was allowed to eat shit, I sometimes wouldn’t. As much as I wanted to stick my face in the baked mac and cheese, I knew that the practice of it would muck me up. It is hard to get back up from the suction of these foods. The practice of eating the way I used to.

I was reading a People magazine article on Roger Ebert last night. It was about the beloved film critic being silenced by his cancer. Staring at his picture his is visibly maimed. His face a scarier rendition of the pop icon he was. Looking at him scares me-he is a living, breathing reminder of what can happen to all of us. Cancer. But the one thing me, and I’m sure others, haven’t considered is how scary it is that he can’t talk. Or eat. Or taste.  

You would think he would mind being vocally silenced, but Ebert describes the sadness of not being able to eat or drink. He is never hungry or thirsty, but he dreams of tastes. He once begged a doctor to put coke in his G tube. He couldn’t taste it. But he still wanted the recollection and comfort of his old drink. This old ritual; a distant memory of taste. The doctor agreed and poured into his tube.

What he misses the most isn’t food, but the experience of dining; the experience of eating at a family reunion,a greasy spoon at midnight. He grieves for these experiences, not so much by the loss of his voice. Fucking fascinating.  As hungry humans, how much of us would choose food over voice? Think about it-if you had to lose one, which would you choose? To never speak again or never eat lasagna or drink a coke, or anything, again?

I didn’t have my lower jaw removed due to a slow growing salivary tumor, but holy fuck I can relate to this. When I am on the MS Diet, I lose this entire side of my social life. My friends meet up for dinner and drinks and I can show up, but I miss out on the joy of dining with them, even if I can eat a salad, there is gluten in the dressing. They don’t have brown rice. Butter in the sauce.

The temptation of just sitting there and watching them eat, smelling their food, my stomach turning over, sucks. It is hard, nothing enjoyable about it. Furthermore, who wants to dine with me? If you had a 106 lb. skinny-ass, boring girl next to you while you ate a soufflé it would probably not be very enjoyable for you either.

Ebert’s book, Life Itself, is coming out in a few days. I’m going to buy it. I have a newfound respect for this man, who I truly never disrespected-I never considered him at all until I stumbled on this article. He says in it “To begin with, I must make this clear: Many people have problems much worse than mine, and at a much younger age, and sometimes joined with other disabilities. I may seem tragic to you, but I seem fortunate to myself.”

How can I not buy his book after that? Or follow him on twitter? I want to be his friend. Amen.

 

Yesterday I lost my job...the opposite of science

Yesterday didn’t go as planned.  Maybe nothing is going as planned.  Zoe started school-her first day of first grade.  I would have started teaching school the day before her, but instead I chose to leave teaching and write from home.

The logic was I have enough hours writing freelance to get by. If I didn’t spend $150 at Target every time I stopped for toilet paper, we could financially be fine-yes? And I’ve been watching Extreme Couponing incessantly. We can get by. Yes.

 I’ve prayed on this. And this was my train of thought-I’ve worked two jobs for the past year. I made more money than I ever have in a year, BUT I’ve also watched my  body disintegrate from 142 lbs to 106 lbs. Energy levels depleted. MS flare-ups at a high. Yes—I not only can make it work, but I have no choice. I have to make it work.

So I wake up to Zoe hovering over me, dressed (on her own) by 6 am. I fall out of bed, tired from a night of AJ vomiting and crying. Check my coffee, drink my email and low and behold-my hours are cut. Cut to the point where I feel like I essentially lost my job. OK, a little punch in the stomach. I held it together and took Zoe to school. I was weepy on so many levels. My little girl is growing up. I’m unemployed. My stomach hurts.

I came home and found out that metaphorical punch in the belly was whatever bug AJ had the night before. I spent a few hours vomiting and trying to watch AJ at the same time. Finally,I called my husband. He came home and I retired to my bed and played Diary of a Wimpy Kid over, and over and over. I would sleep and watch, sleep and watch.

I woke up feeling stronger this morning. Not so weepy.  AND, I had another job offer last night.  Sometimes God has a way of leading me. At the time that something happens, I don’t get it. I’ll curse or mope or resist. But He always delivers me to a better place. I have to stand by that—even in the dark because that IS faith—believing even when you can’t see; especially when you can’t see. It is the opposite of science.