Category Archives: Ryan’s mind

It Tastes Like Burning

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I think I’ve figured out that I do better handling physical pain than I do the monotony of exhaustion, queasiness, and discomfort. Physical pain functions somewhat as an enemy that I can fight against while the other stuff seems to keep me more depressed and unplugged from life. It creeps up on you and doesn’t give you a direct enemy to stand up against. So I spend most of my week sleeping though Saturday, Sunday, and Monday I have a bit more energy. Saturday is reserved for my family, Sunday is my big social day as we have our community meal (though few realize that following the meal I literally sleep/rest from 4 ’till the next morning!), and Monday ends up being filled with prep for the week ahead(counting out pills, doing bills, etc.).

As far as an update, in the last week a new symptom has crept up where the skin on my sides and stomach feel like they’re on fire. The nerves are on edge and I spend most the day trying to keep a shirt, wife, or sheet from touching me. Today I talked to my doctor about it and guess what…I get to go back on steroids! The steroids are intended to reduce any swelling in my spine that could be causing the symptoms. Additionally today I’ll be going in for an MRI to make sure there’s no bleeding in my spine that could also be a cause.

All in all I’m a week and a half away from being done with my radiation and chemo treatments which means that I’m about five and a half weeks away from my first set of MRI’s that will show progress or digression in fighting against the cancer (the MRI I’m receiving today shouldn’t provide much valuable information at this point in time). Pray for that date at the end of September!

I miss being a part of y’alls life but I am still constantly amazed at how we’ve been  cared for. I could list off over 100 names of people who have brought us meals, helped pick up our house, or have sent gifts or cards. The good news is that now that I’m back on steroids I’ll be able to cry again as I think about how amazing you all have been (I’ve truly missed the gift of tears lately).

See you all soon (after August 24th hopefully)

peace.

Quilts and their stories

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At any given moment my bed will be covered by a number of different blankets. Each one tells a story.

  • The ratty blue quilt that’s barely holding together, the one we take on picnics and to the beach was made for my by my wife. It’s the only full sized quilt she’s ever made and she made it for me. This quilt has been to two foreign countries (Texas and Portugal) and its been a mainstay since she gave it to me after I graduated from high school and before I left her for two long years. I love this blanket ’cause it reminds me of her.
  • The tan quilt was made by my family and was a gift to my wife and I for our wedding (ok, the ‘gift’ was about a year or two late). It’s got stitches from my nieces, my cousins, my sisters, my mom, and maybe even a few others. I love it ’cause it represents my family and my marriage to my wife.
  • We also have a giant quilt covered in awkward photos, funny quotes, and meaningful words. It was given to us by the Renovatus Church community when we waved goodbye to our six year long love affair with them in January. Each square was designed and made by a different person from that community. I love this quilt because it represents such an important part of my life that includes some of my most favorite people.
  • My mom made me a small blanket that is so worn it’s barely used. It’s covered in pictures of my family and its squares are made from fabric of my childhood. I love this quilt because it reminds me of my family and my childhood.
  • I have been given two quilts during my time fighting against cancer. One was made by my aunts and my grandma. It has the scent of frankincense (a scent important in the Christian story and also an important herb in fighting cancer). My sister and her whole church also made me a quilt. It was stitched on by strangers and loved ones alike and has ribbons stitched on that are associated with central nervous system cancer awareness. I love these blankets because they’re reminders that people are praying for me and my family.
I love the story that my bed tells (ok, that could be take the wrong way now couldn’t it?!) While these blankets don’t capture everything that matters to me, they catch much of it. So please know that if you love me you’ll make me a quilt…or else.

Ups and Downs

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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?

Growing Old…Fast

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The roller coaster just keeps going! My transformation from a 28 year old young adult into a 75 year old man is happening faster than the yearly crawl that my upcoming birthday (and life in general) normally promises. Not only did we get married young, have our kids young, get a minivan young, plant a church young, and have my first cancerous tumor young, but now I’m the proud owner of an oxygen bottle that I tote around with me wherever I go! I remember being creeped out as a child by people with the oxygen tubes that went across their upper lip–always wondering “how far up their noses do those tubes go!?”

Every day when I wake up I need a little help from my wife, the pill bottle, and the shower to get my back in good working condition. Due to me still recovering from the surgery and the lack of stomach muscles (because of my paralysis) my back is pretty jacked up. It spasms pretty often while in bed and when I wake up in the morning the tightness across the blades is quite extreme. But on Friday when I woke up it felt different. There were sharp pains in my mid back, side, and upper shoulder. The pains were so sharp that they kept me from taking deep breaths. We had plans later that day to drive two hours out of town to see some dear friends who had flown in from the midwest so I acted quickly and setup a massage for 11:30 to see if we couldn’t work through this stuff.

The massage didn’t make a huge difference with the sharp pains, but between that and some vicodin I was able to have a good time and make it ’till evening. Well, to make a short story not so long, come evening time the pain got worse and my ability to breath got worse. My wife called our oncologist who sent us directly to the ER. At the ER they diagnosed me with lots of small blood clots in my right lung and a few in my right leg. Even as they put me on blood thinners and IV drugs (always quite the fun experience) the pain got so extreme that at one point I found myself curled up on the hospital floor while trying to make it to the bathroom. Finally they put me on oxygen, found a drug that managed my pain better, and even sent me home that night.

It is crazy to think about how quickly things change. A few months ago I was a healthy 28 year old young man. A few days ago I was too young to have cancer. Now I’m a 75 year old man in need of some ear plugs ’cause kids these days play their music too damn loud!

In an instant, in one morning, in one week everything can change. And there’s nothing we can do about it. We can fight it and be miserable. We can avoid it and live in ignorance. Or we can embrace it as a part of being human and grow from it. I hope I choose door number three.

Creating the New Normal

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A good friend of mine started saying the phrase “we’re trying to create the new normal” a lot lately. I like that. I think it’s a good summary of what we’re trying to do with the Grassroots Conspiracy here in downtown ‘Couve. Normal often sounds appealing. Teenagers spend most of their time and energy chasing after this illusive idea of being normal…But as Dave Ramsey would say, you don’t want to be normal ’cause normal is broke. While I’m not necessarily talking about money (though how we use our money to bless the world is a part of it) it is true that we don’t want to be normal! With regard to community and how we do life, normal is to be lonely. Normal is to busy. Normal is to spend every afternoon and evening watching TV. Normal is to idealize self sufficiency. Normal is to eat unhealthy and to eat on the run. Normal is broke (I mean this both financially and with regard to how life is lived). Normal sucks and does not produce the kind of life we were intended for.

Part of what’s been so beautiful in how we’ve been cared for up through this stage of our fight against cancer is that it is creating a new normal in our community. YOU are a part of creating a new normal for what it looks like to care for people in distress. Normal is to respond with help when things are urgent, when things are fresh and exciting, and to respond for a short period of time. Normal is for Jess and I to not ask for help and to suffer quietly in the name of self sufficiency and pride. Normal doesn’t work. Normal is not the picture of community that we are trying to create. The new normal is going to fight to be different. It means that the person in crisis is willing to receive help, it means that second and third waves of help come after the immediate emotional response. It means that lines are blurred, that everyone gives and receives as they are able, that every gift is valued no matter how big or small, and that awkwardness is embraced rather than allowed to hold us from speaking.

So thank you to all of you who are a part of helping to create a new normal for how we care for those in crisis and do life together. In no way are we done or have we arrived (arrival is a mirage, process is a reality…right?) but we are continually carving out a path toward what it means to do life together. The new normal is counter cultural and it necessitates a community of conspirators who are willing to rise up and embrace that counter cultural posture as a part of a movement of people who are different…because if we’re not different then we’ll just end up normal…and who wants to be normal?