Ups and Downs

Life is filled with ups and downs. Even if you look at the American economy you can see how things ebb and flow, how fifteen years ago everything was perfect and we could do no wrong to today where we don’t seem to have enough jobs or money to go around. Ups and downs.

One week I was in Disneyland and the next I was discovering that I had a tumor in my spinal cord. Another week I was taking joy in learning to walk only to then find out that walking was the least of my worries. The week that I finally waved goodbye to steroids was an exciting time, but it was followed by ten days of excruciating headaches from withdraws. The night of the amazing fundraiser planned for us was followed the next day by the emergence of blood clots in my lungs. Ups and downs.

Its been a challenge the last week to find energy (both physical and emotional) following my bout with blood clots because it starts to feel like there’s always going to be ‘one more thing’. Additionally its to the point now where its hard to think about a future different thats not filled with constant rest, doctors appointments, and nausea.

Lately it’s been feeling more down than up…but as we know life is filled with both. Neither define us but both shape us. Both invite us to become new creatures, transformed into something that we could not otherwise be. Some lives are filled with more ups than downs while others are filled with more downs than ups. Most of my favorite people have experienced lots of downs.

As a follower of Jesus my belief is that death’s ass has been kicked–that life will one day be filled with ups–that the downs that we experience this side of death are temporary and only wet our appetite for a future consumed with peace, love, and joy.

Until then I think we’re invited to live into a reality that does not yet fully exist, we attempt to join in with God’s movement in bringing that future into today’s world. But part of that is the freedom and even the necessity to grieve the brokenness (the down moments) of life for what they are: imperfections introduced into God’s perfect creation.

Life is filled with ups and downs. Lately I’ve been experiencing more downs than ups, tomorrow may be different…and that’s just life this side of eternity. We anticipate, we wet our appetite, and we seek to bring that reality to todays world while simultaneously grieving the fact that it has not yet fully come. Downs suck…but that won’t always be the case…at least that’s where my hope lies. Where’s yours?

Such a Trip…Seriously

I can’t think of any other phrase except to say “what a trip”!

Even just a few weeks ago I had never pictured myself as a rehab patient (I probably should have…but I didn’t). I know my story is nothing at all like the movie Regarding Henry but it is exactly what I felt like yesterday as I spent my first day in the rehab unit here at the hospital. You know those two bars that rehab patients hold onto as they learn to walk for the first time again…that’s me! What the what? You know those teams of encouraging PT’s and OT’s who are saying nice things, giving them pointers, saying “come on Ryan, one more step…” that’s me! I’m Harrison Ford from the movie! (except that I wasn’t a jerk before hand…and I can talk and read…and…yeah…you get it). It’s just such a trip to realize that I am actually, genuinely, completely learning how to walk again.

I know this post has not been an epic one of powerful words, well written thoughts, or even a cohesive news update…but if you haven’t picked up on it yet, I’m just now coming to grips with the fact that my new (as of right now) reality in life is that I’m a baby learning to walk. Who’d a thought? A few weeks ago I was in pain…but I was walking down Main Street in Disneyland! Shoot, a few days ago I was anticipating surgery and in bad pain, but in 48 hours of time I managed to get down to the pub and even plant some spinach in my garden. Now? Now, I’m giddy to have a strap on pee bag so that I don’t get tangled when I try to use my walker. What. A. Trip.

And yet…my body is doing well. I’m moving more than I should. My pain is less than it should be. I’m full of confidence and energy. I’m in what appears to be an amazing facility. I’m still crying constantly about the support of my friends and family (…yep…just cried again while typing this…), and I can gladly call this home for at least the next 7-10 days.

Here we go!

 

(Just as an FYI that need some more of the details…we’re waiting for positive pathology reports to show up between June 7-10. Once we get those reports we’ll be able to have a more firm understanding of what to do concerning the left over tumor ‘fingers’ intertwined in my spinal cord. Right now the spinal damage being shown includes lack of bowl/bladder function and pretty strong paralysis down my right side from my belly button to my shin…more or less. There are other spots of numbness, tingling, etc. as well but these are the major concerns)

Our Story As Best I Can Tell It Now

I don’t know why I didn’t do this first thing, but let me lay out for you as best I can the story of what’s been going on the last few months with regard to all this filthy disease stuff.

  • Over 4 months ago my right leg randomly stopped working. There was no pain, no numbness, nothing particularly alarming. It just flopped. I actually noticed it while walking down main street, I was annoyed at the sound of my foot slapping the ground. I didn’t think much of it and just tried to walk “better” to the extent that I didn’t even think to tell my wife. It was probably a strained muscle (I work out so often right?!). Jess noticed about three weeks later as she claimed I was “lumbering as if i had gained weight”
  • My parents bugged me, my wife lovingly requested me, and finally I saw a doctor. The doc checked me out, had me stand on one foot (poorly), and a battery of other tests that showed that…surprise…I couldn’t stand up well. She began to order an MRI of my lower back because of my single symptom but instead decided to check with a neurologist colleague at OHSU who changed the order to a neck and upper back scan. This change changed everything. Had it not been for that change the tumor would have been completely missed by the scan!
  • And then my clinic did what they seem to do well…they never followed up on the MRI order. In a way it worked well because it allowed us to continue our family trip to Disneyland without any larger impending cloud raining on our adventure. The only negative here was that the week before our trip south I started getting more symptoms. Numbness in my feet, sharp unbearable pains in my back, tingling in my ‘good’ leg, and shooting abdominal pain. In one last effort I tried to see my doctor before we drove to the DL but was informed that she was only seeing women that day…so I laughed, wrote it off, popped lots of Advil, and waited ’till we got back from our trip.
  • Disneyland was awesome and I won’t tell you about it here. The stroller served as my cain and I hobbled around just fine. I had to be somewhat cautious about what rides I went on and only made a bad choice once…or twice. Otherwise, a slow pace, a stroller, lots of pauses, and Advil kept me moving just fine.
  • On the first Monday back from an amazing time in Disneyland I was finally able to sit for an MRI (it only took me calling the MRI office and my clinic to personally make the referral happen). From morning ’till afternoon I laid still for differing MRI machines as they sought a powerful enough one to see through my massive muscles (I think that was the reason). They told me it’d be 4-5 days to get a report but it was that very night that we had a missed call from my doctor…For me this was the first legitimate sign that I actually had something wrong: super rushed results.
  • Tuesday morning we went into our clinic for a follow up appointment to Jones’ swollen lymph nodes and I came along to hear from the doctor instead of over the phone the rushed results of my MRI. I and India in one room with my doctor, Jess and Jones in another room with his doctor, we came out to share the news with each other that I had a spinal tumor and Jones could possibly have lymphoma. Not a great start to the morning. From the lobby Jess left to get Jones’ chest x-rayed and I left for a meeting…and our day was off (though this time with some new knowledge!) My doctor assured me that she had rushed the surgeon referral and that I’d hear from a surgeon within 24 hours to answer any of my questions (because she had very few if any answers) so without any information really (size, type, placement, etc.) I waited to hear from a surgeon.
  • By Wednesday afternoon I had still not heard from a surgeon, so I called and got my surgeons number and rang his office…they’d never heard of me nor received a referral. So I called my clinic and they let me know that it’d be a two week process to get the referral through. I asked to see my doctor (still wanting some basic info and some pain meds) and they said that she wasn’t in but that I could schedule an appointment for June 13th. I asked when she’d next be standing in the office and they said tomorrow…I said that I’d be there in the morning. Instead, actually, we ended up going to the ER so we could talk to a real live doctor and medical staff who might be able to tell us what kind of tumor I had, what the time frame was, and whether or not I could get some real pain killers. Best. Move. Ever. Within a couple of minutes of entering the ER I was rushed to the back and sitting with a great doctor who used to work in neurology. I left about an hour later with some basic (though not detailed) understanding of the type of tumor I had, the types that it could be, and (most importantly) with an appointment to see a real live surgeon the following day.
  • On Thursday the hammer dropped and I was finally able to sit down with my surgeon and find out what’s going on. Quickly I discovered that the chances of cancer were small (10%), that the tumor was actually inside my spinal cord splitting it into two, that I was looking at a 5-6 hour surgery where they’d be shaving off unneeded parts of my spine and filleting my cord open in order to remove the two inch tumor sitting inside. I learned that it’s most likely a nice encapsulated tumor that shouldn’t have fingers or tentacles reaching into my nerves (very very good news!), and I learned that I could be in the hospital anywhere from 1-6 weeks depending on nerve damage. I nearly passed out as he shared the information, but it was truly a relief to finally know what lay before me.
  • The surgery wasn’t scheduled until Tuesday, May 31st in order to give my body time to soak up some delicious steroids that will reduce inflammation and also to allow for a team of technicians to be assembled that will put pins and needles in me during surgery and monitor my nerves so as to keep the surgeon from damaging anything more than what’s already been damaged. Essentially the surgeon will poke around in my spine until he finds the least obtrusive way in to get rid of my little tag-a-long in hopes that he will not do any greater damage to my glorious nerves making my bottom half function.
  • Since then it’s been a process of figuring out what functioning looks like until the surgery. The ‘roids are doing a number on my body and the tumor continues to tweak its way that it bugs me. At any given moment my whole abdomen edging up into my lungs goes numb and swells, my face and jaw ache constantly and swell and go numb as well. My ‘roid rage is coming out through tearing up constantly (read that blog post here) and I’m also kind of angry all the time (which is completely abnormal for me). The sharp pains in my back are pretty much gone thanks to the steroids and vicadin but I’ve found that the more I’m off my back the less of my body and face I can feel, the more my heart races, the more tired I get, and the harder it gets to walk. It’s been a tightrope trying to figure out if I should lay flat and be bored out of my mind and useless or up and moving and make my body function worse…but who cares right ’cause I’m getting this thing cut out in just a couple more days!!!
  • All through this I have felt incredibly blessed. Seriously. What if I had found this stuff out right before Disneyland? I’m glad I didn’t. This could have happened a month or two sooner and messed with me finishing grad school. I’ve got an amazing surgeon who has come recommended by three different medical professionals from three different hospitals! I am constantly (constantly!) being reminded of how loved and cared for I am by my neighborhood community, by my former (and present) church communities, by my family, and friends. I have heard overwhelming reports of people (and whole churches) praying from the Philippines, to Korea, Italy, Uganda, Canada, and all over the US.
  • The story is so much more nebulous with Jones right now. Until yesterday he was chilling with a 105 fever for a week and we’re still waiting to get his lymph nodes biopsied. Yesterday, however, he woke up with one of his larger lymphs extra swollen and harder so now, while I begin my surgery on Tuesday Jess will be scheduling his biopsy. The life of a mom eh!? We’re continuing to pray against lymphoma being a part of his story.

Thank you for the notes, emails, thoughts, and prayers. We don’t really know what’s ahead of us in many ways but we are moving forward with confidence in what God has and is doing in and around our lives. God’s story (as I understand it in the Bible and in my own experiences) is always this mysterious blend of messy life and surprising hope. I feel like we’re living in that tension along with a giant cloud of witnesses that include many of you standing beside us who have walked in messier places, who have experienced hope more fully, and who are inviting us into a way of living that is both beautiful, difficult, and ripe with significance.

peace.

A Day in the life of a photo a day

The last few days I have been intrigued by a few photographers who took a photo of themselves every single day. The most amazing story is of Jamie Livingston who took a polaroid of himself every day for 18 years until he died of cancer in 1997. You’ve got to check out the website that has posted all of his photos: http://photooftheday.hughcrawford.com/ its sad to see him slowly deteriorate in his final year of life.

More recently you can see Noah Kalina take a digital photo of himself everyday starting back in 2000: http://everyday.noahkalina.com/ You can see his youtube video that has gone viral below. This video only chronicles six years (some 2300 days!) worth but is a fascinating watch!

I’m intrigued by one main thing. One, is how valuable and powerful a steady and consistent routine can be. If we commit to doing something every single day it becomes something more than it ever would have been on its own. This fits positive things like saying something you appreciate about your spouse every night at bedtime, to negative things like drinking a couple glasses of wine. You do either of those things every single day for 10 years and something changes. It becomes something more.

Will we commit to anything? If we don’t…haven’t we then already done so?

Death

Death has (and should) defined following Jesus from the very beginning. Christianity is called to be a mysterious comination of life and death.

It is through the death (and the fact that he rose back to life) of Jesus that people find life. Before his death within the context of the passover meal (which is a meal centered around the Isralite lives that were spared amidst the death of the Egyptians) that Jesus told his followers to remember him by continuing the tradition of the passover within a new context. This new context was that the bread now represented his body (which died on our behalf) and his blood (that was spilled on our behalf) both of which can only be understood surrounded by the context of his life that was constantly being poured out for those around him. Jesus offered people living water, called himself the bread of life, and used metaphors associated with living things (mustard plants, growing seeds, water, bread, sheep, trees, etc.) to communicate the nature of his mission and his church. At the same time speaking about the kingdom he said that “unless a seed falls and dies…”, and “you must deny yourself, take up your cross (death), and follow me…”, and again “whoever loses his life for my sake will find it…”

Death and life.

We see this in the early church where people were willing to live radically for Jesus. When disease would break out in a city in those days everyone but the sick would leave town. It was a quarentine of sorts. But the Christians stayed. The Christians were the ones known for staying behind and caring for the sick even if it meant risking death for themselves. We can read story after story where Christ followers were willing to die because of the phrase “Jesus is Lord” that they refused to renounce. They found life in those words. They found so much life that it was worth death.

What in the world have we made being a follower of Christ turn into? We argue about carpet colors, we spend billions of dollers each year in new church buidling construction (it was 2 billion a year in the 80’s), we spend our time trying to keep all the Christians happy (in other words we’re spending time prioritizing Christian needs over those outside our doors), we spend time arguing about worship instead of engaging in it, we fight over being more right instead of “fighting” over being more sacrificial…you can fill in your own experiences here.

If I know one thing for certain its that Jesus did not die so that we could be comfortable. Comfortability is probably an enemy to living in and living out Christ’s transformational kingdom. Comfortability is in opposition to dying to self.

If we are to truly experience the mystery of the church, that is, of experiencing both life and death, we’ve got to start with the question “is Jesus Lord of my life”. If Jesus is lord of your life that implies that…

  • You’re relinquishing control
  • You’re giving him access to every aspect of your life
  • You’re willing to join him in death
  • You’re able to join him in resurrection
  • You’re invited to live resurrection daily
  • Carpet colors do not matter
  • Fill in your own blank here