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This I Believe

WebofLifeIn my religion, each member has a different belief system based on their experiences. Every year my Unitarian church asks 4 people to present their own sermon of sorts. We are given 15 minutes to share what we most believe at this time in our lives and how we got there. Often times it is an opportunity to share what is unique about your path. I was given the honor of sharing my This I Believe a couple of months ago and wanted to share it with you all as well:

I have written this presentation at least 5 times, each time it was completely different. It is amazing how many things you can really BELIEVE a matter of 6 weeks. If I had stuck with earlier drafts, you would have heard about my Catholic upbringing, or my passion for the arts and theater, or 10 minutes on how amazing my little girls are. Eventually I realized that I have had three events in my life that have shaped what I believe more than any others.

The first was my baptism, a sprinkling of water that tied me forever to my Catholic roots; to my grandmother who only voted democratic once — for JFK — because the trinity trumps politics; it ties me to the midwest and a family that goes back 6 generations in Iowa alone. This baptism would one day allowed me to be an “altar kid”, carrying a solid wood cross twice my size down the aisle, almost beheading the entire 3rd row before my dad caught the swaying cross-turned-weapon, saving the priest who was dodging just behind me.

The second event was actually two separate moments in time, those two moments when my entire world split open and sprung my most precious gifts, my girls, who shook my life back down to its roots with the purest love I have ever experienced.

The third event was less so an event, it was more like an unexpected redirection. Now that I think about it, it reminds me of the time I was learning to jump horses at camp. My horse decided she was done working, one jump before I was. We ran at the gate from across the ring, I leaned forward, ready to soar over the fence with power and grace, and the horse stopped dead in her tracks. Sending me flying over the gate without her, thrashing as I hit the dirt.

Eight years ago, 10 months after the birth of my first daughter and about 4 months after my husband Bryan and I signed the book here at WBUUC (after hearing about it at a Peter Mayer concert), a searing ribcage pain sent me into my GPs office begging for relief. It took over a year of undesirable tests and failed diagnosis to realize that this was not just an irritating bump in my path, I had again been thrown from the horse and I had no idea how to get back up.

I was born Catholic and I fell in love with a Jew. When Bryan and I came to the doors of WBUUC we were like many, first baby in our arms and looking for something my original faith had not offered. I wanted my child to know the same kind of community I had, but so much more. And, I wanted her to understand that there was something bigger than herself out there, whatever that would be. The idea of spending a moment of peace here each week, looking out that window, listening to this music and pondering what I believed seemed such an absolute indulgence to a crazed working mom still nursing her first-born. Before the pain I had the luxury of believing, or nor believing anything I chose. When the pain moved in, I needed my beliefs to stand the test of adversity.

When I first heard the term web of life it seemed a sweet, if a little hippie-dippy, concept reminding me to care for the world around me, to follow the golden rule. My experience of chronic pain has given me a deeper understanding of the life and death nature of this principle. In the movies, when someone becomes seriously ill they take to their beds, absorbing the care of family and friends until they come out triumphantly on the other side. In the world of a lower-middle-class mom, you have an invasive medical test and then hurry back to work before your lunch break is over. I dream of a day in bed.

I am diagnosed with a disease called Sphincter of Oddi, a rare and incurable disorder effecting the valves in my pancreas. It causes a variety of digestive fun along with 24-7 ribcage pain, it is similar to gall stone pain. To put that into perspective, every time I’ve stood up here to read, or in the Religious Education classroom to teach, or waited in line for morning coffee, I have been in pain. I am in pain right now. I control the intensity to a certain level with medications delivered through an implanted Medtronic pain pump.

The experience of chronic illness is not the stuff of movies. At its worst, chronic illness makes you feel as though you have been kicked off the web of life, rendering your own existence unrecognizable. The medical system is not the God-like place we hope it will be, when Doctors run out of solutions they tend to push you away, or worse, make you feel that your pain is only in your head somewhere. Employers, who once appreciated your investment, start to see your sick days as a hit to their bottom line. And after 8 years, even the most dedicated friends start to fatigue. It is hard to blame them, I went from a person who spent her time chatting about Gossip Girl to someone preoccupied with her fight for insurance coverage. I’ve also witnessed something I’d never imagined would happen, loved ones finding fault with my choice of treatment and using that as a justification to completely ignore my disease. Ultimately, I think it is just to hard for them to come to terms with the fact that I will have this pain for the rest of my life and they cannot do a thing about it. But, it is the most isolating kind of coping mechanism I’ve experienced. I have looped the steps of grief for each of these relationships many times, mourning a loss of faith and trust that I had in them.

At them same time I have become someone who absolutely needs people, something that feels very out of fashion in our up-by-the-boot-straps culture. I’ve had Doctors listen to me and treat me in a humane and loving way. My current employer trusted me when I said I could leap into a new career, chronic pain and all. I have friends and family who call every time I go through another test or procedure, sending cards with words of encouragement — even 8 years later. They have supported me in every way possible, including the roof over my head.

Many marriages falter under the weight of chronic illness, when the in sickness and in health part becomes very real. I married a man who meant what he said. Bryan has been my constant advocate and soft place to fall. And when my girls come flying into the bedroom in the morning, urging my grumpy butt up-and-at’em, I am grateful for their inspiration. These are the people who have grasped my wrist and held me on the web of life when it felt like no one wanted me. When if felt like life itself had betrayed me.

People are always trying to find a silver lining in all of my pain. I think they want to make something they cannot imagine into something they can feel OK about. I’ve lived with it long enough to be OK with that fact that it just plain sucks. The thing that makes it OK , even more than meditation or prayer, is the active love of family and friends. I believe more than ever that we all belong on this interdependent web of all existence: healthy or sick, rich or poor, working or jobless, thin or fat. I think we all like that idea, but only if the beings on the web meet our specifications, meet our criteria for deserving support and love. I hope that this experience has and will continue to teach me to love without conditions and to understand that we all have something important to share.

I can assure you, from the position of someone who knows: a day, hour or even minute spent stoking the star-dust in someone’s pained soul is the holiest of work.

 

Squeaky monkeys and Light

MonkeyMy husband and I rarely have enough cash to buy each other traditional Christmas gifts, if he’s lucky I manage to put a bottle of his favorite scotch in his stocking. However, we do make sure our girls are able to get some little things for each of us. This year we decided to keep it interesting by asking our 2 year-old what she wanted to get us, promising to buy exactly what she said. So I asked her what she wanted to get her daddy and she said, without hesitation, that she wanted to get her dad A TOY! And then she added, with absolute glee, “a squeaky toy!” If you’ve experienced my husband’s relationship with his girls you would know that this fits perfectly into their love of goofy, noisy, silly stuff. If it burps, farts or makes a face they absolutely lose their minds. He calls our youngest his Monkey Boo, so we found a squeaky monkey in the dog toy section at Target and wrapped it up. It was perfection.

On Christmas morning I unwrapped a beautiful candle set from my little one. My husband tells me that when he asked her what she wanted to give me she replied, again without hesitation, Light. My two-year-old gave me Light. If only she understood how profoundly she has brightened and lightened my life.

We celebrate solstice at my Universalist Unitarian church, which often includes a meditation on absorbing the peaceful dark, actively waiting for the light. For me, it beautifully compliments the quiet manger scene many of us contemplate at Christmas. I feel like it mirrors my struggle with chronic pain just as perfectly. I am trying every day to make peace with the dark, while finding the light wherever I can.

So many of us create hope and light for our friends, family, community, and even ourselves, during this winter time. However, it is rarely met with choirs of angels singing praises. This year we should be that choir of angels for each other. Let’s be loud in our support, gratitude and love.

I’m going to regress a bit into my 2-year-old brain, the one that recognizes what is funny, what is beautiful and what is important, without hesitation. I hope you all got a bit of light for the new year, it is a gift to be treasured.

 

You don’t look sick

pain-faces-web

Recently my pain clinic posted a video asking patients how they want their lives to be remembered, it seems we have choice between “she was such a kind person, but oh, how she suffered,” and  “she lived her life to the fullest!” I guess the answer is supposed to be #2, all made possible by the clinic’s amazing treatment plan. Don’t I wish the answer was that simple, what kind of idiot chooses answer #1?

It is hard for people to know how to approach me. One of the most common compliments I get is “you don’t look sick!” I suspect they are scrutinizing me; trying to connect the person I am here in my blog with the person they see everyday running around with my kids. I’m not sure what a person with chronic pain looks like, maybe those faces on the pain scale? You have to watch pretty carefully to catch my “tell.” My weekend looks just like anyone’s: my husband works on Saturday and I take the girls to swimming lessons, shopping, errand running; Sunday is church and some weekend fun at the zoo or park. We love our family movie nights at home, or a dinner splurge out on the town. There isn’t time for illness, so I do subtle things to make life possible: like taking meds though out the day to keep the pain and nausea at a reasonable level (what a concept); I use a stroller for my little one and her daddy carries her more than I do; I sleep-in when I get the chance, leaning on my remarkable husband to wake with the girls; I am beyond exhausted at the end of the day, far more than I should be. But, most days, I’d rather end it in absolute collapse, than spend it on the couch waiting for my life to return.

It is easy to discount my pain by conceding that if you can’t see it, it doesn’t really exist. I further facilitate that notion by living, for the most part, as though it doesn’t exist — it is just easier on relationships.

I had an officemate who would notice a tell I wasn’t even aware of: I would hold my breath at my desk when my pain was ratcheting-up. She would notice that I wasn’t breathing and say something simple like, “it must be bad today.” I am glad, and proud in many ways, that I do not look sick, however, the unassuming way she acknowledged my illness was such an unusual kindness. It made it easier for me to keep on pushing, just because someone acknowledged what was really happening to me.

If I have learned anything throughout all of this, it is that we need to be better at acknowledging each other’s pain, without judgement or comparison. So, I guess my answer to the clinic’s question is: she lived life to the fullest, because she had love and support all around her.

7 Januarys

JanuaryYou remember that thing in middle school (I assume it still happens), where a kid is rushing down the hallway, her arms full of books and another a-hole kid sticks his foot out, sending the first kid flying to the ground, stuff scattering all over the floor? That has been 2013 for me so far.

I spend my holiday vacation gathering up enthusiasm for the new year. The nausea meds were working and 2013 was going to be IT! I was already planning the tattoo I would get to celebrate when the pain finally vacated. January was the month that my Doctor would finalize my diagnosis and schedule the cure.

I just had to fail a couple of tests first. I began with another MRI. Did you know that 1 in 100,000 people are allergic to the contrast they use to day-glow your insides? Turns out, I am one of the lucky ones. Not going to go into great detail about what happened in that tube, nobody needs to relive that. Test two was an endoscopy (scope down your throat to view your insides & take pictures), they threw in some secretion to really piss-off my pancreas.

The attending Doc woke me from my sedation haze to tell me that everything looked great, “absolutely fine” he says smiling at me. I could barely speak, I think I nodded. Lucy just yanked the football away, again. I lay there, on the ground, for a day and a half.

Figuratively, of course. My body got up, put on my winter gear and hiked back to the car with my family. I crawled onto my couch with my girls, cried with my husband, and took an extra day home to comprehend how I would revive the part of me that makes the hope.

My girls are magic

My girls are magic.

I have proof by way of illustration: My pain has decided to double in the last week for no apparent reason (really must figure out who has my voodoo doll).  I came home from work a grumpy mess, extremely self-loathing and unhappy that my husband had to leave for work instantaneously.

Seeing as I’d taken all of the pain pills allowed, I self-medicated with a piece of leftover pumpkin pie – which my sweetly smiling 15-month-old ate most of, who can resist those big blues? She then insisted I sit on the floor with her to play Little People, while her big sis did her practice-spelling test at the kitchen table.  I grabbed a couple of pillows and hit the carpet.  She proceeded to pull all of the plastic animals out of the toy barn and pile them on top of me, while making the appropriate animal sounds.  Then she tried to shove every one of them in my mouth or up my nose. We were both giggling and it broke into an every-girl-for-herself tickle-slash-kiss-every-part-of-her-face fight. For 15 minutes she did what my Doctors cannot, what my meds cannot, what I cannot do myself; she made my pain disappear.

Magic.

Desperately seeking Cher

I’ve become a reoccurring Saturday Night Live character. And not a fun one like drunk sorority girl, someone more akin to Rachel Dratch’s Debbie Downer. The worst part is that I am aware of it – I’ve started to hate talking to myself. 

I’m sure you can relate on a different level. Imagine you have a nasty cold, one of those viruses that knocks you on your butt: you have no voice, your coughing endlessly, you can barely get your lungs to breathe. You want more than anything to be home, in your bed, with your mom serving you hot tea and hugs. BUT, you are at work, attempting to be productive (for whatever insane reason people go to work sick).  No matter what anyone says to you, it is really all about your flu. Sickness trumps everything and whining about it, receiving sympathy, helps you cope. Even if you manage to be productive, that bug is king until you are breathing easier.

It is the same for me, except it never freaking ends. So accept it and move on, right? Seven stages of grief and all, right? I have circled the wheel of grief so many times I should have a free ride punch card. This is the chronic illness bitch-slap: as soon as you accept it for what it is in your life, find a way to continue to be happy and productive, the disease changes the game. You get sicker, your meds quit working, your pain finds a way to invade yet another hour of the day. Pack you bags, you’ve been called up for another tour.

This is all to say that I am trying. I know that I am an obsessed, distracted and annoying friend. For my birthday last week, a soul sister posted pictures of the two of us in college. A time when we not only loved Clueless, we  were Cher’s alter ego, short skirts, doe eyes and all.  I feel like this illness has taken my Cher to the liquor store parking lot and kicked her ass. I look desperately forward to the day she gets back-up on her patent leather heels and walks, smiling, into the sunset…or the mall.

The Mitten Monster and other back-to-school magic

 

I was not at home to snap pictures of my daughter heading-off for her first day of first grade today. I was running around taking pictures of your kids. Well, maybe not yours specifically, but the greater you. I was playing photographer for the school district where I work, looking for that perfect Facebook shot. And I have to say, your kids were lookin’ good today, in their shiny new shoes (with room to grow) and their stiff backpacks – ready for a year’s worth of library books. They were very willing to show-off their toothless grins, big smiles paired with that tiny hint of anxiety. I tried to capture the squeals as older kids spotted their friends, taller since they hugged fair-well in the spring. I was feeling that ache that all moms feel when they can’t be there to cheer their kiddos on.

To distract myself, and to keep the weeping at bay, I considered the fun in the fact that I was taking pictures at the school where I started Kindergarten myself, years ago. It was a brand new school and my class was the first to go entirely though it. I don’t remember much from that first year, mostly visiting the nurse (I was one of those dreaded strep carriers) playing house at free time (wish I still loved to iron the way I did then) and losing every mitten I ever wore (to the mitten monster living in our cubby, of course). I do have the vaguest of memories of the girl who would one day become my oldest friend. I wanted to be her friend because I loved her dress, which might be the reason I chose most of my friends. This particular dress reminded me of Laura Ingalls, which meant it was awesome. I was all the more impressed to hear that her mom made it. I had no idea you could make a dress.

My memory of those first days may be a little foggy, but I do know that I managed to make a friend for a lifetime. A relationship which is, I realize now as an adult, as magical as the mitten monster himself. Although I couldn’t be there to hold my daughter’s hand as she walked through that big doorway today, I am wishing her every happiness school can bring. Especially, a friendship to hold her up and carry her through those wondrous childhood days, and beyond.

 

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