Monday, November 14, 2016

We Will Rise Up


The world and our country is in disarray. People are angry, some are ecstatic, some simply scared. I myself, not one for political battles or rhetoric, genuinely thought if Nate and I could find a plan to leave this country for a couple years…to find shelter or safety elsewhere, and have access to amazing healthcare, I was ready to start packing.  Maybe we could move to a place a bit a calmer, even if we built a house against the shore in Ireland and the waves pounded against us daily or we found ourselves somewhere in the cold tundra of let’s say…Canada, I think it would still be a little less crazy, and definitely quieter. I would hope wherever we’d land that the news wouldn’t be reporting about shootings because people are up in arms about who our new leader will be and where our beloved cops who help keep us safe, but whose reputation is muddled by events I hate to even utter, are having to use tear gas to break up the mobs of nasty naysayers that are shouting and slaying words of hate that deep down stem from fear. Fear that this country they know and love will change and the liberties they cling to will disappear.

And in the midst of it all I identify with their fear. Fear of the unknown. Fear for the future, or a question of is there even is a future. This weekend at church I was reminded of so many things. One, that God is not afraid of the future yet there are probably times now and way back then when He looked over Israel or now over us, and grieved and mourned over what had transpired. Our pastor, reminded us, that our mission now, after this election, is to not lose Hope- To bare hope, to love well, and to pray that God will bridge the gap and divides that separate us.

Yesterday, Nate and I took a drive. We’ve been trying (and that means for two weeks since for two Sundays I haven’t seen a hospital bed) to go on Sunday drives that will bring us beauty and that will feed our souls. The two of us like an adventure but it’s probably a lot more slow paced than anyone else would enjoy- but my sweet husband has slowed down for me. I used to try and take him to hike mountains I knew of in my home town and around the Beautiful Bay Area-but now we take drives and stop for pictures of God’s artistry. Sometimes we will take a “hike” (meander down some paths and pant my way up some tiny hills) if I can manage, and other times I swallow my pride and we get out my wheelchair from the back of the car and he pushes me further toward beauty and inspiration.

I had a hard time at one point during our adventure yesterday. I fell into a spell of horrible pain. I tried to share a snack with Nate and about 5-10 minutes after only having a few bites my body revolted. It began to clench and tear and stab and quietly I took some medicine. I tried to remain in my element but nothing would budge so 30 miles later I took some more-knowing my body was not metabolizing anything. I cried. Tears of anger because this I not what I imagined for us-not during that drive or in this life. I told Nate I had to lay back----that the scenery would only be his to see for awhile and just as I said that, the lighthouse appeared. The Beacon of Hope.

In Davenport, a few towns back we stopped at this little airstream with a garden and a tiny shop called, The Slow Coast. Inside the magical airstream they sold tiles by a local artist. I think there were five I wanted but we chose one with the lighthouse…..she called it “our” lighthouse. We wrapped it in tissue paper and not too long after getting back in the car I began my battle with pain. Soon it began to overwhelm me. With tears and frustration I reached for more meds and then the lighthouse appeared. We pulled in as close as we could and Nate told me to just rest, to sit a minute and let my body see if I could get some relief. He gave me permission to stop. To not rush. I sat and stared in amazement at this lighthouse, at the most beautiful wood (I have a thing with wood-if you know me) that was part of a boat that had shipwrecked right among the rocks beneath us. And then I felt well enough to get closer to the water, to take pictures so I could share the beauty I saw through the lens of my life. So, I seceded from my strong will and let Nate get out my wheelchair. I sat wrapped in blankets and he pushed me towards the lighthouse and the sea. I could see in such beauty the clouds and the waves and again I felt hope.

Back at church the night before we talked about Shadrach, Meshach, and Abednego. They lived an alternate story than the others, defying King Nebuchadnezzar and refusing to bow down to what he wanted them to worship. They believed that God would deliver them from the hottest of fiery flames that the King was going to throw them in. They proclaimed that their Lord, who happens to be my God, would show up. And in Daniel 3:18 they say, “But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.” And do you know why they said that? Because they believed that their God was good.

If you know the story, you know it goes on that they are thrown in the fire and sure enough a fourth figure appears and it is the Lord delivering them from the flames and saving them. But, I learned this weekend that even in the flames of life, when we are hurting and suffering and debilitated by pain and life, even then, if not all is fixed or answered and your story doesn’t involve coming through the fire unscathed-He is still there and He is still good.

On our drive, Nate spoke words to me that no person wants to hear. But a lot of my fear right now involves leaving people I love or trying to make sure I get things done or wondering if the ones I hold close will be okay. I fear never being out of pain, of living life with everyday harder than the last. My physical strength gone. He said, “I don’t know how much time we have. I hope it is many years, but even now, if we are on your road to death I never want you to be overcome by fear. I will make it through. It will be hard and I will be crushed but I will be okay. So do not die in fear. Die with your hope shining, die finding joy in the little things, by delighting in all of the nature and little things that you love that no one else notices or pays attention to. Die shining so that others see the light.”

So, I guess not matter what road you are on-Know that there is a lighthouse.  There is a tower of hope and strength and even as you suffer from the burns of this broken world-He is still there. He has showed up, He is still good. I am choosing to bring flowers instead of flames, with His light, wherever I am, and whenever I can.

This song touched me wholly this weekend. It hit harder than home. Please watch and listen- and I hope it gives you the strength to rise up against whatever it is that is hurting you or that you are scared of. Even after this election, where we are so divided-We will rise up.


Monday, October 24, 2016

Not Your Typical Quinceañera


For as long as I can remember I have been astounded by God's beauty. I am often overcome with the most joy in my heart when I am able to witness the facets of nature, His artistry, and all of the splendor and magic of it. I strive to live a disciplined life so I am afforded the chance to stand present, at least once a day, and take pause to stop and stand in awe and wonder at the intricate details of all the creations and masterpieces right in front of my very eye. I am particularly aware of the color that surrounds us in the plants rooted into the soil of the ground, the thousands of different kinds of ivy that curl up on tiny tendrils-framing a trellis, much similar to the curls that frame the innocence of a young girl's expectant face as she attends her first prom. I stand in amazement at the extension of the branched trees and their ever present posture upwards, a challenge I myself struggle with.

There is a famous quote by Anne of Green Gables where she exclaims, "I'm so glad I live in a world where there are Octobers." I love fall, I love when the air changes from hot to just a tad brisk and where there is a slight crisp beneath my feet as I crunch leaves with every step. However, while my wardrobe repertoire can now include cardigans, flannels, and I can don close-toed shoes, Octobers have been my nemesis, my breaking point for a very long time.

The curse of October and more specifically surrounding around 7-14 days in the middle of the month began in 1995---when I had to have my appendix taken out in an emergency surgery. I was in 6th grade at the time, my first year of middle school, and missing anything seemed earth shattering. Then of course there was the October they discovered my inclination towards kidney stones and my bodies inability to process protein. After a failed attempt at surgery, a doctor telling my mom I was just histrionic, I ended up back in the hospital with a 103 degree fever and the discovery of 8 uric acid stones at once, causing a total of three surgeries and a 10 day hospital stay- all while trying to remain Junior Class President, build the Homecoming Float in our front yard everyday after school, and trying out for the Varsity Basketball Team.

I was also diagnosed with endometriosis, the great nemesis of my life, in the middle of October, my junior year of college- which quickly led to my boyfriend breaking up with me because my life was a bit too “complicated.” I wonder what his life looks like now with children. And of course the October where days after I celebrated the wedding of my life long best friend, my husband and i buried the dream of us ever having children of our own flesh and blood and scheduled "our" hysterectomy.

Well, this October is a rare one of sorts. It is the fifteen year anniversary since my parents made the bold decision to spend all the money they had to save me from the awful chains of anorexia. My senior year of high school, during homecoming weekend, my parents intervened and in an attempt to save my life, they spent everything they owned, refinanced our home, made a decision that we would not have gifts at Christmas, and sent me to Remuda Ranch, in Wickenburg, Arizona. Here I would fight for my life, against an awful disease, both physically and emotionally. A disease, that constantly told me I would never be enough. A disease that ridicules and frazzles me because it is all about control and something that can never be obtained.

My saving grace, in the desert, were two girls named Linze(with a "-ze" back then) and Elizabeth. The three of us forged a bond that no one else will ever be able to understand. We were all admitted within three days of each other so our treatment schedule coincided with one other and when Family Week approached, we all spent it together, navigating through hurt, speaking truth in love, and seeking reconciliation so that upon our return home, we would be better equipped to face life outside the confines of an Intensive Care Prison disguised as a Dude Ranch. Since our timer together, 15 years ago, in that desert place, a lot has happened for all of us. We have all seen each other again, our families have reunited on certain occasions, and while we all aren't the same age-the three of us girls all got married the same summer in 2010.

As with most things- time, distance, life and growing up kept us from being in contact on a super regular basis but when one of us was going through anything at all, there was no question that we would band together. I remember distinctively returning home from Remuda and although I should have been elated as a Senior in High School with tons and tons of friends at my house to welcome me home, all i wanted to do was go to my room, pick up the phone and make phone calls to Tennessee and Maine.

While those girls were my saving grace, I stand by the fact that other than my husband, the Great Saint Nate and Spring Training in Scottsdale with the San Francisco Giants, Arizona's most redeeming quality can be found in her sunsets. Every evening, as we either walked to the building to eat dinner or were walking back to the main house for our next scheduled activity, the sky would literally overcome me with promise. It was there, in those cotton candy skies that God reminded me that He was still with me. In the purple puffs and water-colored arrangements above, He wrote to me messages of Hope. Saying, “daughter, you did it today. you can do it again, tomorrow. And I am with you.”

Fifteen years since that October in the desert and you better believe my body didn’t let me pass that by without one heck of a Quinceañera Celebration. While my parents were off in the homeland of Ireland, celebrating 40 years of marriage, my pale, red-haired, little dysfunctional disaster of a body, threw one heck of a party.

In a traditional quinceañera, a girl is often bestowed with beautiful jewelry and make no mistake I was admitted to the hospital and received a beautiful hospital ID band. Yet even with a luxurious 6 day/5 night stay I never received a second gift of an allergy alert bracelet. Also, in this celebration a young girl chooses special friends to be in her Court of Honor. These are normally her closest friends, siblings, cousins, and the special people in her life with whom she wants to share the spotlight. And while the Quinceañera wears a ball gown, her Court of Honor wears gowns and tuxedos.

But, around here we did things a little differently. I wore pajamas and sometimes had to be in a hospital gown and my Court of Honor, it was really small, because very few people knew I was hospitalized, and I really just wanted them to wear their cozies. Moving forward, I know my Court of Honor will still be very small. If you want to join in, I warn you the waters aren’t always pleasant, the journey is often long and enduring, but that is why we wear only the comfiest of clothes, the coziest of socks, and we huddle together under blankets-with memory foam pillows, tissues for tears, ice chips for the unbearable nausea, graham cracker sticks and applesauce for when we think we can eat, hand lotion for our dry and brittle skin, worship music to calm our aching souls, candles to slow down our rapid beating hearts, and we mostly beg my brothers, Aunt Karen, Somerlyn, and Pastor Dale for comedic relief so the fear does not overwhelm us.

With the Quinceañera, comes the changing of the shoes. Traditionally, this is when the father of the girl gives his daughter high heels in exchange for her flat shoes. Well, sure enough…we are in the process of getting rid of all my shoes in exchange for only brands that are “comfort” brands, ergonomic, fit my custom insoles, and I can wear when my feet have swollen to two to three times their size. The arches of my feet have collapsed and many tendons have come undone but we can’t have a surgery to reconstruct anything because EDS will just undo whatever we try and fix. I must wear slippers at all times inside because being barefoot is just not safe or comfortable. So here, at this 15 year celebration, EDS has us throwing out the high heels in exchange for shoes that age me an easy 50 years more than my birth certificate really states that I am. Yet, still my shoes look younger than my whole body feels, so it’s a win!

Finally, there is the brindis, or the toast with champagne glasses of well wishes. I will typically be drinking water or juice, lemonade if I can get away with it——but you guys keep drinking whatever it is that suits you and let’s toast to the fact that we know each other. That our stories include one another, even the bad days, hard days, downright disappointing and derailing, dreadful, decades (I know, I said decades…but that just may be my story). But also, that we have each other to send pictures of each others babies to, to watch our favorite teams with, to squeeze hands with during times of worship when all we can do is cry, who we can indulge with over cookies and french fries, and give our favorite clothes to when they no longer fit us or we perhaps are cleared for early departure. God, Himself is our greatest gift in that He gave us His son, and then He gave us each other so that we did not have to do this alone. I, myself, need that reminder more than most.

Nate and I, we are hurting, we are scared. But we are not alone. We just have to ask. And although we are burdened we are still available to offer ourselves to others because giving is so much better than receiving. Fifteen years have passed since those days in the desert and I would do anything for Lindsey or Elizabeth. Unfortunately, Lindsey and I sit in similar places right now, both in uncertainty, fighting again for the very life God gave us.

Like myself, this past year Lindsey was diagnosed with a very rare disease. Unfortunately, hers is a type of cancer and they have given her 6-12 months to live. While my timeline is a bit more vague, I ask that you pray for my dear friend, Lindsey in Maine and as she travels to NYC to receive treatment for her vipoma tumor. Pray for her husband, her brothers, her mom, her step dad, and her father. But above all pray for her faith. She has asked me that she would find it. That God would find her and she would have faith and certainty. I pray that I am given an opportunity for the three of us to have one last reunion. Three sisters who fought together to make it out of that desert place and by the grace of God were given second chances and each other.

This Quinceañera marks fifteen years of being a literal chaser of sunsets. I am keenly aware of the sky and the way the sun filters through it. I know God writes to me in the clouds, in the storms, when it is raining, when there are stars, lightening, blue skies, fog, smog, all of it. I worship God because I see Him all around me in nature. His promises meet me there. I hope you see Him there too. Amen.

*This picture is from the second night of my hospital stay….the view from my hospital room. He was there, even when I thought I was sinking.

Sunday, May 15, 2016

a diagnosis


It was in the Spring of 1997, almost two decades ago, when doctors first told my parents they thought I had a tumor on my spine. However, after further testing, I remember receiving the news with my two parents and sweet Grandma June, that the pain I had been experiencing was not a tumor but in fact a fracture of three vertebrae that had already begun to re-heal on it’s own, causing the imaging to look askew.  Awkward, freshly turned 13-year old girl that I was, was fitted for a body brace, instructed to only take it off for showers, assigned many, many months of physical therapy, and was told my back would never be the same.

Fast-forward almost twenty years and I suppose that doctor’s appointment was perhaps the most foreshadowing tale of my entire life. Things certainly would never be the same and I would never return to a life without marked physical pain and the emotional hurt that coincides from being chronically ill and the stigmas that our society places on people like myself. If you know me you know that the next years were filled with eating disorders, depression, and kidney surgeries of more than a baker’s dozen. It was a joke between my parent’s and I that the orderlies at my neighborhood hospital, who would wheel me up to the OR, knew me and recognized me. Turns out it was more than a laugh or a joke to get us through or standard pre-surgical jitters---His name was Miguel, he always smelled freshly shaven, I never knew if he was bald or had hair underneath his surgical paper cap, and his shaved arms, filled with tattoos, glistened under the neon glow of those hospital lights. On the off chance that we would get someone else instead, we always asked where he was or if he was still around, as if we needed to make sure he was okay. And sure enough when I left to go to college only to return at break for another surgery and the next year to take a year off for health reasons, he too had worried that I had moved or hoped that perhaps I landed on the other side.

Unfortunately, the other side to this tale is a battle that we lost. The surgeries, the treatments, the prescriptions, the specialists---they consumed me. A disease that even when taken out at its knees will find a way back to suffocate you once more. My endometriosis has done irreparable damage to not only my body but also my soul. After 3 rounds of medically induced menopause, I4 surgeries, infertility specialists, parents who to their demise were left empty handed, and the most supportive husband in the world, 538 days ago I had a total hysterectomy and in 3 hours my body managed to age 3 decades. There is nothing in the world like it. What we thought would help lead my body to restoration sent my body into a further path of destruction and revulsion- marking the time between the day I woke up as a barren woman and present day the hardest span of physical and emotional obstacles that I have ever encountered.

For years I have experienced a wide spread of symptoms throughout my entire body. From as far reaching as one day over eight years ago waking up with an uncontrollable and debilitating headache that still to this day has never gone away to spontaneous vomiting after eating without warning, to feet too swollen to walk on, to pain so significant in my back and shoulder that all I can do is lay down and pray out to God that He would take it away. I could go on and on for hours but that is not the point. The point is, the pain, the sickness, it is everywhere. We have had every blood test, every homeopathic, every diet, acupuncture, voodoo, you-name-it-I-have-tried-it, sort of thing done.
Blood tests will often show that my body is high in white blood cells and is fighting an infection but they won’t know where. Studies will show autoimmune markers at play but not anything easy to diagnose. Brain MRI’s will show disturbing patterns but nothing “textbook.” As time has gone on my body has no longer been able to sleep or eat without having an allergic reaction. And while my hands are in too much pain to open jars or do ordinary tasks and I’m unable to walk on my feet, while my body is rejecting food and the headache constantly pounds in my head, and the searing muscles contract throughout my entire body, I have become a different person. Not different in heart or spirit but different in what I can offer; that’s for certain.

My priorities are in making sure I get to my scheduled doctor’s appointments and that I do my best to have enough energy and am not overwhelmed by pain so that when Nate comes home I can have a conversation with him. I’m no longer the friend that will always text you back or will reach out beyond measure- not because I don’t want to- but because I can’t. In this past year and a half we have had some very surprising characters walk into our life to love us and with that there has been the harsh brutal reality and exit of those we thought were our closest, lifetime friends. Those who questioned if I was really sick, if perhaps I was just depressed, even some who told me it was a sin to even speak of my struggles. Although, there is pain there is still laughter. I am still a good friend to those that have not shut me out but I refuse to not be authentic because that is always what my best friendships were built upon.
In Chronic Illness there is a theory called the “Spoon Theory.” The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses don't need to worry about running out. Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people just to get through the day.


With that theory in mind, some people may think I have changed, when in reality, I must just use my spoons wisely.

One week from today, I will have been married to my Saint Nate for 6 years.  It will be a total of 2,190 days that we have spent together as man and wife. 10 days ago we were given a diagnosis- Ehlers Danlos Syndrome (EDS) and it was one we definitely weren’t hoping for. There is no easy treatment or cure, no prescription or easy one size fits all treatment plans, which is what I had been praying for. Instead, a lifelong debilitating illness that will only further progress as time moves on, causing my body to wreak more havoc on itself and cause me more debilitating pain. 

Essentially, EDS is a connective tissue disease. The Protein Collagen is the main structural component of the body and it is used in all 12 systems of the body meaning that this syndrome has comorbidities with every organ, joint, and muscle. So far, we’ve discovered that my bone density has dropped 50%, my thyroid is functioning below normal as well as my adrenal and pituitary glands, both arches in my feet have completely collapsed, I have another fracture in my lumbar spine as well as a herniated disc and several cervical herniated discs, my feet are subluxating out of my ankle joint every time I walk, I have dysautonomia which will need to be tested for a more serious condition called POTs, I have gastropareisis ( a motility disorder w/ malnutrition) and eosilophic esophagitis (both GI disorders that are hard to manage and often don’t occur together so managing them simultaneously will be/has been very challenging, pelvic floor instability, severe chest pain, Raynaud’s, worn away jaw joint, insomnia, scoliosis, osteoarthritis, CRPS, neuropathy, migraines, allergies and mass cell formation, and severe chronic neck, back, hip, hand, and foot pain. There’s a website that clearly discusses all of this is depth if you are interested. I also have many more resources but it’s very overwhelming and I’m shocked if you’d made it thus far.

It is said that Ehlers Danlos is the true invisible disorder. Our bodies are built this way for some reason and in order to strengthen them it takes twice the length of work it would a normal person, the work cannot be rushed and must be stretched out over a long period of time, and we must exert much more than twice the effort. With this in mind, I’ll probably never be a body builder. I think part of what exacerbated this for me and made me fall down the rabbit’s hole (although it makes sense that I have had this forever) is that after my hysterectomy I had to come off of hormones for about 18 months and I lost all muscle in my body. With a few weeks time my body turned to mush, which I believe probably only hurt me even though my symptoms and comorbid conditions have been going on for some time.

This weekend my cousin graduated #1 in his class of 250 from Medical School from Tulane in New Orleans. It is said that in medical school they teach that, “if you hear hooves look for horses.” Essentially, don’t go chasing down something that isn’t there. However, with EDS our ribbon, our symbol is a zebra. You might hear hooves and they might be rare, but zebras do exist. And just like every zebra’s stripes and pattern is different- so is every patient with EDS.

I’m proud of my cousin and his achievement this weekend but I will tell you that I ache. That we ache. Again we mourn for a life that we imagined. It was always still in our hopes and thoughts, “When you get better…” and while things may become more manageable, “better” isn’t my anthem (I'll tell you what my current anthem is tomorrow). I never dreamed of this life. I never wanted this life. I wouldn’t pass it off to anyone else if I could. It is ugly, hard, messy, painful, often times unbearable, and yet beautifully mine. It is ours. God gave Nate and I the chance to see life like most people never will. He is letting us practice love, a depth of love and service and real sweat through your t-shirt commitment to each other that some marriages may never know.

Yet, it is lonely and tiresome and we wonder. About a lot of things. Like if we will always need to eat cereal and pb&j for breakfast, lunch, and dinner or if we will ever get that proud title of mom and dad.  We are sending this update to you so you can know where we are. We are asking you to pray. To pray for health, to pray for a future that wildly exceeds the one we currently curse. We ask that you pray for provisions and that in some miraculous way that we would be taken care of and cared for (financially and practically). There are many things that we need and would be useful and we trust that God sees us in our need. We also ask that He would bring us into a deeper community with people who genuinely love us and that the two of us will grow richer in love with our Lord and each other. Thank you for reading this and for being in our life and our journey.

A Half a Dozen and Still in the Fight,

The Bruce’s


Sunday, November 22, 2015

Why Not How?


Two days from now will mark the one-year anniversary of beginning a battle I didn’t know I was entering into. I knew that 12 months ago I was bidding farewell to life as I had always known, to my body as I had always been accustomed, and to dreams that I had always held onto but I was unaware that I was shaking the box of its contents completely. Everything as I knew it would be turned upside down and inside out, nothing was sacred and left untouched because of it and I’ve spent the last 12 months waiting to find footing so I could finally sit down to write that the storm has settled. 

I knew my hysterectomy would leave me with grief.  How could it not? You don’t exhaust all other options, pray for a hail Mary miracle, and literally pound your fists against the bathroom floor, while laying in a puddle of your own tears, and then gracefully oblige like a ballerina into the operating room. At the age of thirty, days before Thanksgiving and my next birthday, I followed the recommendation of doctors and the ones I had gone to for second, third, fourth, and fifth opinions, and let them strip me bare for a total hysterectomy. On that cold Seattle morning, my husband and I were discouraged and defenseless. In a matter of 3-4 hours my body would age just as many decades, and I would hand in my mamma-to-be hopes and dreams for the chance at a better quality of life. Our hope was that pain would no longer dictate my day and perhaps after almost 20 years of being the bleeding woman, His cloak would cover me, bind up my wounds and heal me.

However, after my operation, not only did I go head to head with “Monster Menopause” without the assistance hormone replacement therapy but my body suffered many physical repercussions because of the surgery, leaving me in a far worse state post surgery than prior. Everyday felt like living life with a stranger. Not only did I not physically look like my old self, I felt completely different. Foods tasted different, I was no longer able to sleep, I had inexplicable pain, my feet were swollen, my blood tests began to go awry, and life began to simply come undone.

With each passing day, my circumstances and my health status worsened and my heart grew weaker. As someone who had lived with chronic illness for so long I had mastered the ability to put on a happy face when needed, to get through a specific task, social event, or even a conversation. But now I found myself not even able to hide the pain I was in. Even the people I thought were my inner circle proved to not want much to do with me until I reached safe harbor.

I was dizzy. In circles I cried out to God.
Where are you?!??
Again…
Hello?
Why, Lord. Why?
I spent hours in tears wondering if I could make it through. I was questioning God, wondering why He still had me in this place. After two decades of pain, illness, surgeries, hospitalizations and having been stripped of my dream to have children, instead of turning a corner I sink deeper.
The rains beat down heavier.
Have you been there? Have you asked those questions? Crying out to God, have you wondered, why? Why, me? Why, this? Why, now?

Why, did my parents get divorced?
Why, my sister, in that car accident?
Why, me that was raped?
Why, my mom that has to die from cancer?
Why, my brother with autism?
Why, did my husband cheat on me?

So many questions. And we feel entitled to every.single.answer. Sometimes, even worse, others believe they have the answers for us.

In the Gospel of John, chapter 9, verses 1-2, Jesus and his disciples pass by a blind man and the disciples ask Jesus who sinned, the blind man or his parents. The disciples assume that the reason this man is blind is because he either committed a sin or his parents did and being blind is his punishment. The disciples believe they have the answer.

I’ve been in that place before. Have you? I’ve been asked by very dear friends what un-confessed sin I had in my life that was making me so sick. How do you think that would go over if I told my best friend what a shame it was that it was the sin in his sister’s life that killed her in that tragic car accident? I’m guessing it would go over as well as it did when my friend asked me what sin was causing me to be physically ill.

Jesus answers his disciples by saying, “Neither this man or his parents sinned but this happened so that the works of God might be displayed in Him.” And after he says this, Jesus heals this blind man.

We ask questions of “why” and Jesus turns and asks questions of “how.” It does not promise us in the bible that all of our questions will be answered before we meet our Maker face to face. However, that does not mean we are not encouraged to talk to God about them, to go before Him and pour out our hearts to Him. Yet, often times our entitled “why” will be met with Jesus asking us “how” the glory of the Father can be displayed in this situation.

I’m not sure the answer to the “why?” is even enough for us. I don’t know if it would provide the healing we need. But, knowing that in some way we are part of God’s greater plan, and “God works for the good of those who love Him and have been called according to His purpose,” that elicits hope. I will never get to see God’s hugely dynamic peripheral perspective but I can claim victory that no matter “why” in some way it is for His greater glory.

In looking at “how” we now get the opportunity to ask:
How might this current trial glorify God?
How might the pain be used for a purpose?
How might God use your weakness to display His power?
How might God reveal a characteristic of Himself to you in this situation that you would never have seen before?

It’s a hard transition moving from “why” to “how” and I will admit I go back and forth. It’s hard to even acknowledge that such immense pain in my life could do anyone else any type of good. However, earlier I mentioned how anxious I was for the storm to pass so I could sit down and write that we had reached a place of calm, a safe harbor of sorts. I was anxiously waiting to find my footing, to find my health. I wanted to send out a declaration from the mountaintops, to report something amazingly positive about how God had met me in my greatest time of need.

Yet, here I am. I write to you in the midst of a major storm. My health is substantially worse now than it was entering into that operating room one year ago. There are a lot of unknowns, a lot of defeats, frustrations, and still puddles of tears. But, in the brokenness He is choosing to use me. I don’t have to be stitched up and a picture of perfect health before I stand up and say something. My inner circle may have changed but my marriage takes deeper roots with each challenge we fight together and while the “why” seems relentlessly unfair, “how” the Father wants to take this and use it for His glory is what is most important. I’m beginning to ask how God wants me to see Him in deeper ways, how He wants to reveal Himself to me even in my physical pain and emotional exhaustion that I would never have been able to see otherwise, and how even in the darkness He wants to use me as a source of His light.

As someone who has never been a fan of confusion, this quote, written by Rainer Maria Rilke and given to me by my dad, many years ago, has never been more true: “Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.” 

Beloved Daughters, even in our brokenness we are a part of His masterpiece. Intricately woven into His grand design. You don’t have to be ready you just have to be willing. “Why” may never be an answer we receive but if we offer ourselves to live into the “how,” we can find moments of peace even during the downpour.

Wednesday, March 4, 2015

Lost



I don't have eloquent words today and this probably won't end pretty or with some brilliant conclusion. Today, yesterday, the day before that and the last weeks have been desolate. I cry the ugly tears, I bang my head against the wall, my fists are clenched, and I might be better off if I only attempted to breathe into and with the assistance of a brown paper lunch sack. I am severely broken and when I look down and see the mess scattered all around me I have no idea how anything will ever come together. The musician and lyric mastermind John Mayer has a line that says, "I'm in repair--I'm not together but I'm getting there." I have yet to even reach "in repair."


If I let you in a little closer I will say this, things have gone from bad to worse. This operation, although I know it would change me physically and would bring challenges physically and cause me much emotional pain, was supposed to bring me some relief. It has instead caused me to live in my own personal hell. For starters, I'm in as much pain if not more now than I was before having the surgery, except now I have been stripped of my womanhood. In addition, I am struggling through surgical menopause and every last one of its side effects which are 100 times more intense than the natural menopause that all women face at some point and I am only 31 years old. I am unable to start hormones which I don't know yet if that is a good or bad thing but my body has gone on strike against me and since the surgery I have gained inexplicable weight. Just this last week I gained another 6.5 pounds in 7 days time. You have no idea how many hours I have spent crying tears of frustration over this matter. It isn't normal to have put on this weight based on how much I am consuming and I dread leaving the house because I have nothing that fits me, or that I can pull past my thighs, or even worse feeling anxious about being seen only further adds to my state of pain and desolation. Most of you know I suffered from severe anorexia my senior year of high school. God spared my life back then, but the mentality is something I must challenge myself in every.single.day. With day, after day, of added pounds that battle is hard. I am not comfortable in my own skin. Something I have spent the last 13-14 years working on. And even greater than that is when I have nothing to put on I am sent into a full blown anxiety attack every time I leave the house. I'm worried about the cautionary warnings on my hair dryer that say do not use near water because i Can't help but to sob at what life has become in these past few months. I'd like to crawl under the covers and stay there until this whole disaster is over.

So, in other news, the Oscar's made me cry. And not during a moment everyone else may have shed a tear. During Patrica Arquette's acceptance speech, she took a moment to preach about women's rights and equality and while it was poignant, well received, and something that needed to be heard from as large a stage as the Oscar's, the first line as she dipped into women's rights was, " “For every woman that gave birth, to every tax payer, for every citizen of this nation, we have fought for everybody else's equal rights...." After she spoke, I went back and had Nate listen again. With tears streaming down my face, I said "This is why it hurts so bad. For a speech about women she identified them first as mothers. That is our society. We are mamas. We nest, we nurture, it's in our DNA. It's our branding symbol. And not only am I no longer physically a women at such a premature age, I will never join the coveted spot in the mamma's club. Let my body droop, let me have all these lumps and bumps and only be able to wear pajama pants in public, but let it be because I'm also covered in spit-up and vomit and dried up milk, and look a little loony and absolutely sleep deprived, not because of insomnia from menopause but because of a baby who I've had to feed all night and who simply did not want to sleep anywhere but in my arms, while I rocked her in my Daddy's old rocking chair.

The truth is, for everyone, we are never aware of what we have until it is taken away and we no longer have it, or never had a chance for it in the first place. Take for instance some kind of pain or irritation on your toe. It is relatively minor but it is red and a tad bit swollen. There is nothing that can really be done except to just ride it out but no big deal because it's just your toe, right? Wrong. That toe will drive you crazy. Squished in socks and shoes you'll feel it thumping in misery. Leave it out in a pair of flip-flops and someone will inevitably step on it or you'll knock it on something. You were never in your life aware of how great it was to have a healthy ten toes than when something went wrong and one of those normal toes went and threw off your whole game plan.

Well, I am aware. So very aware. For 19 years I have not had my health. When I look out at some of my friends who I'm not sure even go to the doctor other than to get birth control, I am aware of my health and you should be too. I am aware of my ability to have children and to be a mother. I know my chances of having children are obsolete and my likelihood of being a mother is dwindling based on the cost. But, I see beautiful babies all the time and watch my friends get pregnant year after year and study how precious they are as moms. And it is beautiful. I am aware of all the children and mothers around me and you should be too. I'm aware that because of my limitations and disabilities from my illnesses I can't work a regular job and this upsets me greatly because of my degrees I worked so hard to get. Yet, all around me I see my friends and family living their dreams, pursuing their passions, and at the very least making a living for themselves. I am shameful that this is not my reality, but instead mine is medical debt and bill after bill but you should take notice of your hard work and success. Please tell me you do.

My dad sent me a chapter from a Max Lucado book last night, and it really basically said what I was thinking. For so long I've clung to "hope." It has been my strength, my guidance, my rock and right now I feel like I have run out. I know, it scares me too. I know Jesus is my hope and He will restore me to higher ground and lead me out of this thicket where I can't see anything and all I feel is despair but I literally just feel overwhelmed. The one way I am still feel God's presence in this is through a series of worship songs, If any one is interested...let me know and I can send you a copy.

Spring is around the corner and I sincerely hope it is a time where I come out of this dark, dark place. Nate accepted a job offer with the County of Santa Clara and so in two weeks time we will be leaving here. The way I always thought I'd act towards this move didn't happen. Of course, I am thrilled for Nate. He has worked so hard to get where he is but we don't have a big support group down there that understands our lives nor do we have a team of doctor's in place. Also, we thought this remote, work from home job for me was a sure thing and it didn't pan out. I've been sitting here thinking for over 24 hours that I am absolutely good for nothing. I just literally feel disgusted with me and because of that not working out and although his supervisor and director approved his starting salary at a higher level, HR denied the request, so it's possible we will have to live a part for several months while we save up enough money to get a place of our own due to an increase of rent, moving expenses, we just moved a couple of months ago, finding new doctors, having to close all medical debts up here before we leave, etc. I always considered California home, especially San Jose, but right now I have nothing to give. I'm a horrible version of myself and the only people who have ever taken me in like this are Nate, two couples up here in WA and our friends in AZ. I'm embarrassed to show back up in San Jose with nothing to offer, heavier than I've ever been, and beside myself in physical and emotional pain. Please pray for a new job opportunity for me that is feasible for my health and doesn't cause me to over do it, perhaps still with the company it didn't work out with in the first place, for professional writing opportunities, for Nate to finish strong at Boeing, for packing, for financial expenses, and for hope---that it might come back---because I am just so, so broken. I at least want to get to the state of "in repair." rather than being stuck as a discombobulated mess.

Saturday, February 21, 2015

Just a Speck


This past Wednesday I didn’t get the chance to attend an Ash Wednesday service as we were traveling home from Arizona and upon our return I immediately found myself in bed by 3pm. What can I say, physically things have been a major struggle and that whole one-hour time change really had my internal clock messed up (when in doubt blame it on the menopause).

What I find beautiful about Ash Wednesday is that as you are marked with the dark cross in the middle of your forehead, normally it is said, “You have come from dust and to dust you will return.” It is a reminder of our humanness and of God’s sovereign power. He created us out of dust, we do in fact have an expiration date, and when that day arrives to dust we shall return. For some, that might be the scariest thing they have ever heard, but for myself, as a Christian, my mortality does not raise my blood pressure because I know that God sacrificed His son to pay the ultimate price for my sins and therefore we are given the freedom to be honest about our future. We know that this physical life here on Earth is only the beginning of our Eternity.

It is a day for us to recognize and observe our desperate need for our Savior. A time to reflect that we are so far from perfect and without His redemption and forgiveness we are nothing but a finite body. Ash Wednesday begins the Lenten season as we expectantly await for the resurrection of our King, our Savior. It prepares our hearts for a season of not only repentance but also gratitude and awakens in our hearts the most important reminder of our reliance on Christ.

Lent is the 40 days (not including Sundays) prior to Easter where Christians prepare for the death, burial, and resurrection of Jesus Christ on Good Friday and Easter.  Often they(we) take part in either an act of fasting from something, spiritual disciplines, repentance, moderation, or just a simpler way of life all in hopes that while doing these things it will give them more time to reflect on the life of Jesus.

For several years now I’ve struggled at what people decide to “give up” for Lent. For a large percentage of the female population it is some sort of food item that deep down they hope will have helped them lose weight 40 days later. I don’t agree with giving anything up that awards you personal gains. It is supposed to be a sacrificial time.  In fact one year, on my old bog I decided instead of giving up anything, each day I would write about one of God’s promises in the bible. It was actually really great and I did it everyday up until I landed in the hospital and had to have emergency surgery- go figure. 

As I’ve been thinking about Lent this year and what it might look like for me I actually had the horrible thought of, “what more can I sacrifice right now?”  In fact, I thought about putting in place some dietary restriction because of the significant inexplicable weight gain I have suffered from surgery. However, then I become everything I hate and such a hypocrite.

But, as I sit here today and I write about ashes I can’t help but think how many people in the last couple of months have told me, “He is going to make Beauty from these ashes, your ashes” And while I may have given a half smile and slight head nod, my tear stained cheeks have yet to see beauty. In fact, I haven’t written a post in awhile because I don’t feel like things are getting better, I think things are maybe getting worse and I’m afraid to share that. To be real and tell you that my road is still windy, that I don’t see the straight away with that black and white checkered flag waiving me in. How long will people still care? How long will they still listen?

Back in college, my accountability partner and one time roommate and dearest friend, used to drive around in our Jeeps singing at the top of our lungs the Shane & Shane song “Beauty for Ashes.” And you know what we were singing for back then? Beauty for my ashes of sickness and despair. Fast forward 11 years later and if we lived in the same city, much less the same state, I think we would be doing the same thing.

As I mentioned earlier we just got back from Arizona and my heart is a mess. Being there with our community made my heart swell ten sizes. Seeing two of my closest friends from college and watching one of them get married was amazing. Seeing Nate’s family was worth every penny. I got to cry with our friends and just be. And I also had to see how every one of our friends had babies except the one couple who we stayed with. How they wanted to get our struggle but they couldn’t and when I asked a group of friends at a table what had been going on in their lives, my dear, sweet, and hilarious friend promptly answered, “well, I’ve pushed two kids out of my vagina…can anyone top that?” And granted it was funny, it was harsh and painful.  

But, I also had to spend over half the time in bed because I was in a frantic amount of pain. I also began bleeding again and while this may sound completely absurd to you there were days when I was embarrassed to be seen based off of the way I looked. I didn’t go to the doctor this week because I was travelling but as of the day before I left I had gained 21 pounds since surgery, that is without starting the hormones, and eating about one meal a day because my pain levels make me very nauseous and not hungry. For a recovering anorexic that is devastating, it is also devastating that all of my pants no longer fit and of course there is no budget for a new wardrobe. I’m actually terrified to see my new weight and to see what happens once beginning hormones but it is possible that it won’t be until a year post-op that I will be healed enough to begin that treatment. A year. That is how slow my body is healing, how hard and extensive the surgery was, and how much pain I am still experiencing. On top of that I am experiencing major back pain because that is another one of my many health problems. Insomnia is still sticking around even though I told her we weren’t meant to be best friends.

I actually had two almost breakable come unglued moments. Twice in this past week I was asked when we’d get our surrogate and use my frozen eggs. While I definitely kept my cool on the scene I went home, screamed into a pillow, and then sobbed. I know we all aren’t expected to know are medical jargon, but a surrogate? My eggs? Why would I be so upset if that was our plan? If I were to bend over and grab two fistfuls of ashes like it was sand and then let it run through my fingers and out of my hands, dropping to the ground I would just want one tiny speck to catch the light. To sparkle or not be black. Maybe it’s golden. I wouldn’t mind silver. I’m not sure but I need this Lenten season to be about finding at least one tiny speck of beauty in all of these ashes because for years I’ve been lying face down on a beach full of them.

In Isaiah 61:3 it says, “…I will give them a crown of beauty instead of ashes. I will give them the oil of joy instead of sorrow, and a spirit of praise instead of a spirit of no hope…” I know that I can’t put a time line on God and His plan for this story, my story, Nate’s story, our chapters. But, I want to use this season to remind the Lord that I am still here, faithful to Him.  And when He’s ready there are broken dreams, crushed hopes and deformed futures, heavy hearts, shattered spirits along with ailing bodies that are eager for beauty in the ashes.

For the next 40 days, I will remind myself of His love even though I am confused as to how it is displayed in my life. I will recognize my absolute need to have him in my life as my Savior, and I will fix my eyes on Him. The one who writes my story, chapter by chapter. And if by chance I’m paying close enough attention or it’s in His timing, perhaps I will see just a speck as a sift through the ashes.








Saturday, February 7, 2015

Stumble With Me


I made a major mistake tonight. One I’m not proud of and one I’ll be sure to try and never make again. And while mistakes happen all the time, this one made me truly wish I could have started that conversation all over again.

As someone who has been a Young Life leader, who has trained Young Life leaders, who has worked with students, mentored students, loved on students, and in general tried my best to point them to Christ, I think a lot about what Paul wrote in the book of 1 Corinthians. In Chapter 11, verse 6, he said “Follow my example, as I follow the example of Christ.” A very short verse, but oh what a verse. Follow me, as I follow Christ. Essentially, what we as Young Life leaders or mentors of any sort are saying to any of our friends who are looking to our example as they begin their faith journey and sometimes even continue their long obedience in the same direction. However, for the leader, the mentor, the one who’s being followed or looked up upon it may seem like a lot of pressure. Follow me? No. Really. Please, don’t. I’m kind of a mess. And I make mistakes. And I’m not perfect by any means. Let me find someone better suited for you.

But, in my bible, that verse is underlined and in the margins I have this written: “Stumble after me as I stumble towards Christ.” Well, I don’t know about you but I can actually take a deep breath if I read it like that. Stumble with me. Know that I might take a nose dive or walk straight into a bee hive and that doesn’t mean to follow me into what ever disaster I happen to be stupid enough to get caught up in the middle of, but be aware, although my intentions are of the straight and narrow, I stumble, I stub my toes, and I sometimes even stop to look around like I think I’ve got a better way figured out- but I don’t. So brother, sister, come with me and we will stumble together on our journey towards Christ.

Tonight I sat down next to Nate on the couch, it seemed like I hadn’t seen him in a week. And while I have actually “seen” him- this week has been particularly rough for me physically and emotionally. I can’t be certain of why that is but the adverse effects of my menopause has been making my sleep an issue and my physical pain coupled with my emotional heartache was making it also hard to find actual rest. Anyways, we decided to watch a movie and about 10 minutes into the movie I paused it and asked him to come sit closer to me. I told him I couldn’t guarantee how long it would be until another hot flash would take over and I would want to flee from the room and spread out like an exasperated dog back from the longest run, on the hottest day, panting like I’d never had a sip of water. But I did know, in that moment I wanted him near. And I know that my poor husband yearns for physical touch, something he has been seriously deprived of since my surgery.

We pushed “play” and as the movie began again I quickly pushed paused. I knew something wasn’t right. I looked at Nate. With his face, just inches from mine, I asked him what was wrong. I couldn’t place if he was mad or upset. but I knew something was wrong. Exasperated he said, “you know, everything.” (Cue tears as I type this)

Me: “What do you mean?”
N: “I’m just so tired. This whole thing is just a vicious cycle. And I’m so sad we can’t have kids.  And we are just barely getting by… “

And on it went. I sat there silently, holding back my tears as my husband told me he was depressed. That since he’s met me he’s silently watched me suffer physically and now is the worst it’s ever been and it’s really taking a toll on him. He said no one understands like him because he’s knows me most intimately. He wanted me to know that he wasn’t okay, that he wasn’t over his sadness- that he still was yearning for kids of his own. That watching me in physical pain and suffering was hard for him. He actually said he was depressed. For the sake of our marriage and our privacy I will leave it at that. And as I sat there holding his hands, looking at him, my silence rattled him. Pressing me for words, hot tears rolled down my face and I said the last thing I ever wanted to say, “this isn’t good because I need you to be the stronger one.”

As our conversation evolved he said the “manly” things like of course the man is always the stronger one and I stopped to correct him because that isn’t what I had meant. You see in the midst of this horrible place Nate and I are in neither one of us is required to be stronger. Nor should one of us have to be. What I’ve realized and have vocalized to a few of my friends is that we are both in our own pits, in our own dark places and neither one of us knows how to climb out of our own misery, let alone save the other person. Normally, Nate keeps from falling too far down the rabbit hole and when I mistakenly said that I needed him to be the stronger one it was that I thought he needed me to keep him from falling too far.

But I immediately thought of 1 Corinthians 11:6 and I told Nate that I had this vision, this perfect picture of he and I. And we were on a battlefield, badly wounded. Almost wrapped up like zombies from how badly we’d been injured, but we had our arms wrapped around each other’s shoulders and together we were limping forward. And it may have been the slowest limp you ever did see but I was holding onto his wounds so he did not bleed out and he was nursing mine. And while neither one of us could have stood on our own, with our arms wrapped around each others shoulders and necks, we had enough balance to become one- just as God had designed us and we were stumbling after Him together. I honestly don’t know who reads this blog, and I know this entry is a long one but if perhaps you’re a couple that’s like us and you’re in a tragic place- maybe you’ve lost a child or a loved one, maybe one of you has been laid off or you just can’t make ends meet, or maybe you just have found yourselves so far from being that couple who first fell in love---no one has to be the stronger person. Find each other out on the battlefield and limp together, towards Christ.

 Nate and I wrapped up the movie and one of the final quotes of the movie I find quite fitting for my marriage and friendship with Nathan. It said, “You are my dearest friend, my deepest love, You are the very best of me.” For any of you that know my Nate, you know this to be true. He is the very best part of me.

As the movie ended, as Nate and I often do we decided to dance.  The first song was to a song called “Hold On,” and during the song Nate whispered that no matter how hard life gets we would always have each other and that choosing me to be his wife is still and will always be the best decision he has ever made. The first song faded into the second, a song my friend Marty introduced me to called “When a Heart Breaks,” and as we swayed, I began to weep. For the heartbreak before us, the mounds of pain we are enduring, and for the overwhelming love l have for this man, the very best of me, and the ability I have to acknowledge that he is God’s greatest gift to me and although I am broken, confused, and ruthlessly hurting I refuse to ever quit stumbling toward Him.