Archive for the ‘Marriage’ Category

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.

 

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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.

A Wash.

Please forgive my blogger absenteeism; I’ve had 2 wires wrapped around my spine and sutchered to my back. For some reason (because my Doc told me so) I thought that this Neuro-stimulator trial would be easy-peasy. I am an idiot. You’ll be shocked to hear that it hurts like hell to have wires inserted into your body and sewn to you back (I’m a total idiot). Then you wander around for 10 days with all of the exposed stuff taped to your body and you pray you don’t accidentally yank it out. Oh, and you are supposed to be able to discern if it helps your chronic pain, which becomes really freaking hard to separate from the new throbbing in your back.

The trouble seems to be that most of my Doc’s patients are home on disability. My nurse showed visible shock when I told her that I would need to continue to go to my office and care for my daughters during the 10 day trial. Then she sort of gulped, wished me good luck and told me not to lift anything bigger than 5 lbs. Yup, my baby is 16 lbs. This was not going to be the trial I was sold on.

So what does one do when she comes home from a procedure that has made it problematic to care for herself, much less her family? She calls in the team, as much as she wants to be independent, she sucks it up and asks for help. I had a lovely wedding, beautiful baby showers, even a surprise 30th birthday party, but I have never been truly stunned by friendship. Consider me astonished. There was food on my door step every night, childcare whenever I inquired and beautiful trinkets delivered to cheer me. My husband took on the herculean task of handling me (my incessant whining) and our girls from 5 am to way-past-sane pm without blinking. I am blessed beyond reason with the sort of people who just do: they didn’t ask what I needed, they just knew.  They have taught me so much.

The week sucked. I managed to work and my family came out OK (if not better fed) on the other side. The trial failed. I’m trying to wrap my brain around the next one. But for now, I’m enjoying the fact that I can bend at the waist, shower and love-up my little ones whenever I wish. I’m digging out and trying to find the energy to fight again. And, I am awash in gratitude for the love I’ve been given.

Tandem Life

My husband says that bowls and spoons have become the symbols of this pregnancy for him. When I left for work this morning he was elbow deep in dirty dishes, for a pained pregnant wife, it doesn’t get sexier than that.

I have developed an addiction to granola cereal with raisins; it brings me comfort when my legs are crawling at 7am, fills an otherwise morning sick stomach and serves as a middle of the night fix (sometimes while sitting in the bath tub). The result is a kitchen sink constantly filled to the brim with granola encrusted bowls and spoons. I haven’t had the energy or ambition to keep up with much around the house, including the washing of dishes. It’s actually pretty out of character for me and I’ve had to learn to sit on the couch surrounded by things that would normally have me running for the vacuum.

I would never allow myself that luxury if I didn’t trust that my husband had my back. When one family member has a chronic illness, in many ways the entire family has a chronic illness.  It is always there, screwing with what would otherwise be a normal family life.

In the last 9 months my husband has washed an estimated 2 billion spoons and bowls. He trusted me when I said, “I can handle it, let’s have a baby” and has never thrown it back in my whining face. He washes my daughters clothes and keeps her from leaping all over my beached body at the end of the day. He buys the groceries, cooks, keeps the pets fed and has made the 9 pm run for ice cream. He has not only listened to a kabillion hours of pain chatter, from my bitching to my latest cure fixation, he participates in the conversation, keeping me from feeling like an insane and very alone person.

I fully concede that he does all of this with far more patience and endurance than I ever would. I’ll take the credit for discovering, loving and marrying someone that meant his vows. I’ll give him credit for keeping me afloat for the last few years, in a way many spouses cannot.  We are a team in everything, and yet I am grateful. He has a favorite song by one of our local musicians, Peter Mayer, and I couldn’t say it any better:

And when you move, I will too
I’ll lean left, I’ll lean right with you
Whatever road we ride
And I will love you in our tandem life

We’ll have good friends and children
Two beautiful baby boys
We’ll have laughter and sadness and joy

And we will fly these streets
When we find our feet
Turning right together in time
And I will be in your heart
And you in mine

Tandem Life

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