Video: My Story

Thought I would share this with you all. It was made by some friends Kymm and WIll Sargent for a youth group in Newberg, Oregon.

It’s been very enjoyable lately to be able to share my story in different settings. I loved being able to share with Renovatus last night about Grassroots Conspiracy and what it means to be a co-conspirator in the fledgling movement. And I’m looking forward to sharing with the House of Providence crew this upcoming Sunday (June 3rd). Regardless of where I am at, what I am trying to develop is a consistent story that I can share in any context. With only a few minor tweaks here or there to tailor it to the particular situation I’m finding that this works rather well–that the story God’s telling through my family is one that truly does resonate in virtually any setting.

This video captures fairly well the gist of my story as it stands (or as it stood a few weeks ago when we recorded this!)

Whose Story is This?

Both my wife and I live an open life. We’ve always done so. Secrets and even good measured privacy have never had much space in our life. As a matter of fact, people who feel a need to have many secrets and to keep everything “close to the vest” often baffle and annoy us (apologies to those of you who find yourself in these boxes. I’m sure the feeling is somewhat mutual!). I just don’t see much of a need to keep something hidden from you.*

This way of life has not only continued on as I’ve battled cancer, but it has come to define it. Some of our greatest challenges over the last year have been trying to find balance amidst the constant demands for our time, energy, and attention. Living an open life and inviting people into our story (again, something that has been true of us for virtually our entire lives) has in many ways brought more difficulty in this journey. On the other hand it is exactly through this openness that we’ve been able to see massive ripple effects from my story. It is through our openness in inviting people into our story that we’ve been able to see more and more people touched by what’s happened.

“It’s one thing to have your husband die young. It’s a whole other thing for him to die publicly.” There is a sense of ownership that the community at large feels they posses over my story. And, in fact, I’d suggest that I in many ways I gave that to you. Or at the very least I opened the door to my hospital room and hung the sign “visitors welcome”. There are some who see that sign and have taken up residence. There are others who have used that as an opportunity to drop off cards, meals, or color sheets from their children. Some have stopped by regularly for visits. Others simply peak their heads in, knowing that there’s something interesting inside.

Part of me wants to be cynical and relate this with the rubbernecking that we all witness, complain about, and yet participate in on the freeway during an accident. But 90% of the time in my context I do not think this is the case. As a matter of fact I do not think rubbernecking is appropriate at all to describe the draw to watch, participate, or attempt to own my families story. No, that’s not a good illustration because I believe so strongly that the story being told (that’s not a reference to me as the storyteller, but to the story that is unfolding with me, by chance and without choice, as one of its primary characters) is one that is developing great meaning and resonates deeply in our world of broken narratives. I truly do not think that people are drawn to this story because it’s a train wreck but because it’s a beautiful story.

We’re drawn to beauty aren’t we? We’re created to be attracted to beautiful things. We’re created to want to be beautiful. And even though the story that is being played out in my life, in my marriage, my family, and my neighborhood is painfully messy–there is something intrinsically beautiful about it.

Don’t get me wrong, it’s getting harder and harder to live out. The weight of death–even if it does not become an immediate reality–is getting heavier and heavier within our home and within each one of us in the family. We can feel it. More than ever before. And it’s heavy.

I’m not going to attempt to create a framework or to even give advice on how you can be respectful or better care for our family as outsiders to the story.** That’s not the point of this blog nor is it something that I feel fully capable of writing (I’m not even certain that it is something that really could or should be written). The point of this post, I think, is to invite you even deeper into our story by my (potentially foolish?) attempt to expose myself even more in telling you that dying publicly adds baggage to the death process. Inviting you in brings blessing and it bring challenges.

So.

Please wipe your feet on the matt when you enter. Please don’t pound on the door when we actually choose to lock it. Please take cues from us when we don’t want visitors to stay long. Please don’t make fun of my fat cheeks, and please realize that this whole sentence is building off the earlier hospital room metaphor. We’re all drawn to a beautiful story–and my hope is that this story will continue to play out in a way that captures the beauty of the God who I believe is responsible for taking such a shitty situation and giving it any semblance of attractiveness–

Whose story is this? The correct answer is that it is my families! The pretty spiritual answer is that it’s God’s! The cool community answer is that it’s ours! The practical selfish answer is that it’s mine! The sympathetic and compassionate answer is that it’s my wife and kids! I’m going to go ahead and just give it to this guy instead.

* There are obviously needs in life for boundaries–and this is the great challenge for people like ourselves: to create healthy boundaries.

** There are many who read my blog that do, in fact, walk through life with us. In general, however, those that I’m writing to here are those of you who are watching from a distance–many of you from across the world, many of you complete strangers, many of you whom I will never meet. You are all a part of this story because you’ve been invited into the room! But in many real ways you will (and obviously should) find yourselves as outsiders to the unfolding narrative here in the ‘Couve.

New Cars Symbolizing Death

We bought a car yesterday. A nice car. A car that I’d never buy. It’s a 2012 Jetta Sportwagen diesel. Jess and I would never buy this car. But we just did.

We buy junkers. We buy used Hyundai Accents, we buy old Chevy minivans with 100,000 miles on them, we buy cheap older cars. That’s just what we do.

But things have changed. Our old minivan is done. At 200,000+ miles the AC doesn’t work, the windows don’t roll down, one sliding door is permanently shut (because it’ll randomly open on its own while driving on the freeway!), the gas gauge doesn’t work, the brake lights do not work, the cruise control does not work, it needs new brakes and tires, and-oh did I mention-it’s got some engine and transmission work that needs to be done. So we knew we needed something soon. We also knew that when/if I die Jess would cash purchase a new car with her life insurance money. But I’m not dead yet…

So to make a short story shorter, in the end we realized that now was the time for me to be able to care for my wife by purchasing a car together that she was going to have to purchase on her own–to buy her “my husband is gone, I don’t want to worry about cars right now or for the immediate future, I just want to care for my children and recover” car. That “car” has good gas mileage (we hope to keep her monthly overhead costs low if/when I pass), it’s got to have space for children and their bikes/toys/camping trips/etc., it’s got to be a good quality car that’ll last her ’till our kids are in high school, and it’s got to be a newer car that won’t be breaking down often and thus demanding more of her time. She doesn’t care about bells, whistles, shiny things–just those practical things. That’s the car that we realized we must buy now. This week. Today. Ok, as it turns out, yesterday.

There’s just one problem…

I’m not dead!

That life insurance money is not there to fork over in cash for her ‘ideal’ car! How do you buy a car that you can only afford if you die? To be honest we don’t quite have the answer to that question. I won’t go into details regarding the deal we got on the car (though we got a good one thanks to an important connection) and I’ll honestly say that we’re still figuring out what it looks like to be able to afford it–but what I will say is that buying this car is messing me up. It’s messing Jess up. (and this is where I really want this blog to land)

Purchasing this car feels symbolic. It’s the beginning of a new life: a new life for a single mother who has lost her husband and has a new set of needs that demands a new type of car. It’s symbolic of me being gone and of her being alone. I almost feel like by purchasing this car I have given up on living! ‘Cause lets be honest, I’m not sure we can afford this car unless I die! I had better fork over that cash at some point during the life of this loan. Ha. When all was said and done at the dealership and we both had a moment to reflect we found ourselves honestly sad. What had we done? It wasn’t buyers remorse. No, it was the symbolism. We had just taken our first giant and tangible step forward into a post-Ryan world…and…well…it’s weird. I should probably have a better word than “weird” as a descriptor here. I’m sure real writers would use better words but at this moment it feels right. It just feels weird. It doesn’t feel bad because I know that at its core this is a moment where I was able to care for my wife in a very real way: I just freed her of having to do this whole experience on her own (and oh what an experience it was at the dealership!!). No, there was something beautiful about this stepping out together–but it was is very hard and very…weird. It feels weird to drive such a nice car–we don’t drive cars like this. It feels weird not drive a minivan anymore–we love minivans. It feels weird to call it my wife’s car–it’s always been “us”. It feels weird.

It is weird to continually try to figure out what it looks like to live in the tension of reality as it is and reality as we hope it to be. I hope that we end up having to restructure our loan because I miraculously don’t die. I hope that reality as it appears is not reality as it turns out. I hope to live and I know that God can bring this about. but. But. BUT I feel invited to step out in faith, to let go of any semblance of control by being ok with death. By being ok with preparing my wife for my death. By being ok with purchasing a car in preparation of my death. I don’t like it. It’s weird. It makes me sad. It worries me. I hate death. Death sucks. Death is the ultimate enemy. Buying new cars sucks. Car dealerships are enemies sidekicks. But (and there have been a lot of “buts” in this post haven’t there?!) my faith is in Jesus–not in healing, not in an easy life, not in a life that I expect but instead in the story he chooses to tell in and through me. If a new Jetta Sportwagen tdi is a part of that story…cool. Weird, but cool.

So…all that is to say…my wife got a new car yesterday.

Touched by an Angel…on the way from Orlando

Normally when I speak about an angel in my life it’s going to be my wife or my daughter. In every way they are my angels: sent from God as carriers or messengers of love–yep, that’s India and Jess to a T. But in this blog post there’s another woman that I’ve got to celebrate, another woman that God brought into our lives for but a moment–but a moment that continues to make a major difference.

I never would have guessed the war stories that her body had endured. She sat next to us on the plane ride from Phoenix to Orlando two weeks ago and seemed as normal as can be. But she isn’t normal–very far from it actually. She’s as different as they come.

Her story is not necessarily mine to share and I hesitate to share any of it ’cause I’m confident that i won’t do it justice. So I will do my best as long as you promise me to follow it up by reading her own words and I’ll attempt to stick to my own experiences with her so that I don’t botch too much the beauty of her story as it really unfolded.

Terlisa was diagnosed with breast cancer at the age of twenty-nine while a few months pregnant. That was thirteen years ago. At different moments along the way she’s been told that she’s terminal, that she’s only had a few weeks to live, and that she’s walking dead. She prepared herself to never see her girls grow up. She prepared herself to die. She’s written the goodbye letters, made the goodbye scrapbooks, etc. But thirteen years later she’s still ticking. Thirteen years!

But it’s not that easy of a story. Thirteen years of ‘surviving cancer’ isn’t all it’s cracked up to be. You see, she’s not cancer free. She’s not a cancer survivor. She’s been on chemo for virtually thirteen years straight. Can you imagine what that’s like? Her body has been ravaged by chemo and radiation to the point that she’s had to have hip replacement surgery, she’s in chronic pain, and I’m sure a whole host of other war stories along the way that she didn’t share or that I’m not remembering. Her cancer hasn’t gone away either, in fact it’s spread. If I remember right her cancer is now in her brain, in her bones, and essentially everywhere in her body. She is still dying of cancer.

…and you’d never know it by looking at her or listening to her. Every day she leaves her house she puts on her heals. When she goes to the clinic for treatment she brings them cookies. She has a smile on her face as she shares her stories–though, I should pause to say that she is not foolishly ignorant when talking about the reality of her life and story. She spoke honestly and candidly about ‘miracle cures’, about the pain of hope, about the pain of the journey, the losses along the way, the loss of relationships, the loss of freedom, the loss of life, loss…Terlisa understands loss in a very very real sense and she is not shy about speaking into this loss. But she smiles (a lot), and she laughs (a lot), and she shares her stories freely and powerfully (and has in fact written some of her stories down as a part of a book called Unbreakable).

So we sat there on the plane and traded war stories. I wish I could have been more present and asked more questions but I was in the beginning of my own mini-battle of flying with an ear infection. Regardless, Jess and I left that plane inspired encouraged. How could we not? What are the chances that of the hundreds of people who could have sat down next to the Dreaded Cripple Couple it was Terlisa? And what are the chances that half way through the flight she happened to mention that she had terminal cancer? And what are the chances…we’ll, you get the point. We sat next to a messenger from God, a woman God sent to invite us to enter even more fully into the pain of terminal cancer and to walk that tension between hope for healing, hope despite death, and a hope that’s rooted with courage and bravery. At a moment when we had literally only days earlier found out that I had three to six months to live we were blessed to sit next to her. What are the chances?

See what I love most about Terlisa’s story is that it’s not a success story (sorry Terlisa! I wish it were and I hope it becomes one!). Don’t get me wrong, I want it to be a success story as we all define success: physical healing. But to hear a story of hope, to hear a positive story of a cancer surviver/fighter that is not tidy, that does not end in ‘and so I’ve been cancer free for five years’ is incredibly refreshing for me. There’s something comforting in the messiness of it. It gives me one more narrative to hold onto, one more paradigm to put into my bag, one more story that reminds me of the messiness of hope and survival.

I don’t want to have cancer thirteen years down the road…but I would love to be around in thirteen years! My diagnosis is very different from her’s and my current condition is very different and my story is going to be very different. But I could not help but walk away from our time on that airplane with my chest puffed out just a bit. I couldn’t help but walk away feeling a need for a bit more bravery, to face my struggles with more courage, strength, and dignity. I may not throw on any high healed shoes like her and I might not bake any cookies, but I do want to be like Terlisa in how I willingly and boldly face my struggles as they come. She never pretended like it was en easy path, but it was a path that she chose to walk down with grace and strength–I want that to be true of myself. Thank you Terlisa for allowing God to use you as a messenger of hope to Jess and I. I’m confident that your story is and will be told and retold–and I can only imagine the ripple effects that your story has had in your community, in your world, and in the worlds that you’ve intersected with in the last thirteen years! Thank you so very much!

If you’d like to follow more of Terlisa’s story (and you should) you can go to her website here: http://terlisafights.com/

 

F&$%ing Ironic!

Alanis Morissette’s got nuthin’ on me. She wants to talk about irony? A traffic jam when you’re already late? Not so ironic unless you happen to be a city planner. Ten thousand spoons when all you need is a knife? Maybe if you just cleaned out your kitchen and threw away all your knives. Meeting the man of your dreams and then meeting his wife? Nope, not so ironic unless you happen to have just had your spouse cheat on you. Yeah, Alanis didn’t really get irony. But I think I’m starting to get it.

Oh the irony. Let me see if I can’t capture it a bit…

We’ve started a movement marked by the phrase “we’re inviting people to die to self in order to live for their neighbor” and now in a great ironical twist we are seeing the emergence of this movement in our neighborhood in the midst of literal death. Jess and I have lived our lives (at least the last five to six years) to this end, learning, growing, and pushing ourselves toward this way of life only to see (potentially) it happen without us.* We’ve attempted to see an experimental community that is willing to love in radical ways, willing to respond to the needs of those around them in sacrificial ways which demands first a posture of hospitality and listening, we’ve always accidentally been on the front edge of innovating and thinking through new ideas and realities…and now…ironically, we find ourselves once again guinea pigs to our own experiments. Ironically we’re not the ones being able to love others but are instead are being overwhelmed with love, with people responding in creative ways, and with people trying to figure out how in the hell you show hospitality to a family whose only commodity is their precious time. Oh the irony of it all! I could go on…the list gets quite long…but ironically I prefer shorter blogs.

This is just too effing ironic isn’t it?! I mean, come on! Alanis, you’ve got more skills than I, but you didn’t really get the whole irony thing. Let me take a stab…

And isn’t it ironic…don’t you think

It’s like getting cancer when you’ve got no family history

It’s starting a movement about metaphorical death then you end up dying

It’s the idea of inviting others to love your neighbor only to be loved yourself

Who would’ve thought…it figures

Like my previous blog post attempts to capture, what’s emerging in our neighborhood is amazing and beautiful (and I didn’t even write or share about what is happening amongst the amazing co-conspirators who are shaping the Grassroots Conspiracy movement!) But seriously…it is incredibly ironic…painfully ironic…humorously ironic…annoyingly ironic…oh the irony.

 

* Again, don’t get too caught up in the freedom in talking about death. I prefer to speak as if death is the reality (because medically it is) while keeping hope that Jesus will bring an alternative reality. Also while Jess will still be a part in whatever ways she wants or is able, it will nevermore be ‘us’ insomuch as we’ve been partners in most everything we do.