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