Tag Archives: Community

Top 15 Things I've Learned About Fighting Cancer

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(I could have typed a list of twenty…but here are fifteen in no specific order)

  1. Having a good medical clinic with not only doctors that you trust but a supporting staff that serves as your advocate is huge (thank you Northwest Cancer Specialists!)
  2. Physically and emotionally things can swing from amazingly wonderful to hell and back in a matter of hours. Finding that tension between living in the moment and realizing that it truly is just a moment is both important and difficult.
  3. Learning to be honest with yourself and with others about how you feel (both good and bad…though for me being honest with self and others about the bad was much more difficult) is hugely important not only for support but also for your health.
  4. Prayer works. I don’t mean to say that it works like some amulet or charm, that it’s a hocus pocus trick that if you get enough people praying you’re going to make it. But God does speak, he does act, and he does value our voices. In all of my healing (both emotional and physical) prayer has been central…and it makes a difference.
  5. I’d rather be sick than be the caretaker. This is harder for my wife than it is for me and she deserves all the grace, pampering, and vacations I can muster to show her how grateful I am.
  6. A loving and capable wife/caretaker covers a multitude of sins. If it weren’t for Jess I would not be doing as well as I’m doing now. I wouldn’t have always remembered or had the strength to take my meds and do the things I need to do to bring healing. From shots in the belly to chicken noodle soup, from acupuncture in my feet to being my private chauffeur she has covered every base and done it without complaining or faltering even once. Simply amazing.
  7. Being positive is generally easy when you’re constantly showered with support from a loving community.
  8. Being prayed over by your doctors is kind of surreal. Both my oncologist and my naturopath have held my hands and prayed over me in their office. It was a trip and it was pretty damn cool. Not only have both of these two docs prayed over me but they are actively working in partnership together (a very rare thing). What a blessing!
  9. Setbacks are a part of the mix but they don’t define it. Blood clots, pulmonary embolisms, side affects, headaches, vomiting, constipation, weight loss and weight gain, swelling, rashes, etc. came and went (though some seem to linger at times) but they are not the focus. It gets easy to be caught up in these ‘little’ things and forget the real task at hand: killing cancer.
  10. I’d rather be in pain (to an extent) than be constantly overwhelmed with exhaustion. When you’re so tired that you cannot physically function in any way and your brain is in a constant cloud its quite debilitating. At the same time, however, it doesn’t ‘feel’ like anythings wrong. I like that when I’m in physical pain I feel like I’ve got something to fight against, an enemy to beat. The exhaustion stuff was hard on the emotions and soul.
  11. Waiting is what you do. It’s just a part of it whether you like it or not. You wait for results, you wait for recovery, you wait in doctors offices, you wait…wait…wait. Get used to waiting.
  12. There are three ways that we have been blessed by people’s help: Routine, random, and offered. The routine help has been a lifesaver (no joke, i don’t say that lightly); knowing that someone will help us pick up our house on a few specific days a week allows us to focus on things like expending the little energy we have with our children instead of the dishes. Routine help has been wonderful. The spontaneous/random stuff has been great too: when people showed up with cups of coffee early in the morning or pints of ice cream in the evening, when people randomly watered our failing garden outside because they noticed it needed to be done…this kind of stuff brought tears to my eyes often. Finally (and I don’t say this in a jaded way) anytime people offered to help (even if they were unable to follow through) it was a blessing to be genuinely cared about. Even when it did not come to fruition the offers mean something to me and I am grateful.
  13. Supportive parents (on both sides) is such a gift. We couldn’t have gotten this far without our family (siblings included!!). Enough said.
  14. You don’t know what works…and you probably never will. If (when) the cancer is gone I won’t know if it’s because of your prayer, the natural supplements I take, the hydro-therapy I do, the positive energy in our life, the radiation, the chemo, the things I’m doing to make my body more alkaline, the food I eat, the acupuncture treatments, or something else! Most likely the answer is “all of the above” but all I can do is to keep doing the next most right thing.
  15. A story is always being told. In death, in life, in sickness, and in health our lives are telling a story. I hope my story is defined by its inclusion in one larger than itself (larger than myself!) that includes love winning, death being overrun, and peace reinging free. And I hope that regardless of my life situation the story I live is consistent with its inclusion in the larger narrative.

People Make Things Happen (stolen from Brady)

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There are many people in downtown Vancouver who I have not yet met but whom I know of. They’re people that I am aware that I should meet and I know that it’s only a matter of time ’till I do. Brady is one of those guys. I went to a benefit concert for Brady a few months ago that was hosted by the same Anni that hosted my fundraiser last week. At the event I was never actually able to meet Brady, but I’ve seen his face often since then around downtown. I’ve heard amazing things about him both as a person and as a musician and it was at the fundraiser hosted for us last week Brady introduced himself to me and we had a great (though brief) conversation.

I say all of that to get to this, he wrote the piece below last week and I thought it really interesting so I thought I’d repost it for you.

Social media websites like Facebook can be an extraordinary tool when spreading awareness or organizing interested minds for an important and worthwhile cause. However, in our community today, even without Facebook, fundraisers and donation charities are largely successful because of word of mouth.

I’ve often wondered how our community events, especially fundraisers, would be different if Facebook were not an element.

I recently heard that a neighborhood pub, Shannahans, hosted a successful fundraiser, Saturday July 16th, for the family of Jim Schiefelbein. I never saw a “Facebook event” created for it, and there was no advertising on the wall of the Facebook page for the restaurant. To my knowledge, the only public electronic acknowledgement of the fundraiser event was a comment posted on their wall the following morning, by the restaurant, thanking everyone for their contributions, including the hard working staff, and noting that over eight thousand dollars was raised.

Most recently, I have observed that Facebook has been an excellent channel for communicating to online communities the details of a benefit event, such as the fundraisers hosted by Pop Culture for Ryan Woods and by The Brickhouse for myself. The advent of “Facebook events” seems to be a game-changer. It is genius in that all of the important information is collected in one place within the online community and available electronically, which of course also means smart phone users can access it instantaneously. It beats the hell out of a paper flier in so many ways. And also, as is the case with the technology of social media websites, promoting the fundraiser is as easy as clicking “share,” and immediately the information has been made available to new potentially interested minds. It seems almost effortless in comparison to what we did before Facebook.

What did we do before Facebook?

We did what we still do today; we talk to people. A real fundraiser event is like a chain letter; You tell one person and that person tells two people. It’s a chain of events put in motion by one action, and not a one-on-one. Spreading awareness can be done in so many ways including using the telephone, writing to the local newspaper(s), writing to local officials, sending emails to an ever growing list and using other local advertising channels such as radio in addition to using online social media websites. It just seems like the latter is so much easier right? I suppose the term smart advocate could be used to describe the individual who is likely to advocate through the easiest and most instantaneous method, such as “clicking.” I truly don’t mean any cruel judgement by that statement, it just seems fitting. It still gets the word out but I believe some methods seem to reach farther than others. It takes a village to save a villager. In my eyes it is apparent that in the end the real difference comes with the real communities; the Families, the Life-Long Friends, the gathering of Long Lost Families and Associations, as well as the gathering of New Friends and Associations, and the Church Communities.

* What I appreciate the most about a Facebook event page is that all of the information needed for an individual to get involved is collected and made available in one central location, so that it is easy to find, and because of this, it is easier for someone who may want to get involved to do so.

 

I love that both Brady and I attended fundraisers for someone we didn’t know! I love that we did so because of the nature of the nature of the community forming in downtown Vancouver. People do this, they invite, they spread messages and ideas and opportunities, people make things happen.

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?

Why YOU are Killing Me

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In the 4West rehab unit here in the MoJo wing at Southwest Washington Medical Center Sunday’s are our day off. No scheduled therapy sessions on Sunday, its the chill day. Its the day of rest.

Or is it?

By the end of today I was beat, I was beat to a pulp and tired and exhausted and…tired. Did I mention how tired I was? So I didn’t do any formal physical therapy today but I was blessed to live into the world that I love. My good friend Kevin brought Stumptown coffee at nine this morning and we an amazing morning together…and from that point on each hour brought a new friend (or two or three or six) to spend time with. Ranging from our downtown crew, to my children, to old family friends we were blessed with love from nine to nine today. Near the end of it I crawled (or was hoisted) into bed and told our friends that I might just sleep while they all talked…but I couldn’t stop! I can’t stop talking to any of you (that’s what I’m doing right now at 3am isn’t?!) because it’s what I love! I love you all, I love talking with you, I love hearing your stories and making you hear mine!

Much of the conversation today was directed toward the simple fact that I’ve decided that it is literally completely impossible to go through the process of rehab and recovery with negativity if you are surrounded and supported as we are and have been.* You all are changing everything because you have been so present physically, emotionally, spiritually, and any other -ally that might arise. How can I not feel hopeful about my bodies future with so much support and encouragement around me? So while I’m beat from talking so much on my “day off” I wouldn’t have it any other way. Thank you to each and every person who has visited, who has called, who has emailed, who has texted, who has facebooked, who has stalked the blog, who has messaged my parents, who waited in the waiting room, who prayed over us the night before, who stopped by the house leading up to the surgery, and those who are praying and waiting eagerly to jump in once we talk to a surgeon on Tuesday (the 7th) concerning Jones’ lymphs. You are all a part of this and I loved spending twelve hours today with a collection of you. You wear me out…but based on Jurgen’s face when he left tonight I’m pretty sure my catheter stories kind of wear you out too.

Love and peace to you all.

 

* As I type this I realize some of the foolishness of my statement. If my body were regressing right now, if I were getting infections or other major set backs I realize that things would be different…and this genuine realization is kind of sobering actually ’cause it it shows how much more valuable this emotional and spiritual support is especially if/when the setbacks come!

The Conversion of Place

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I was reminded yet again last night the incredible power and importance in staking your flag into the ground and proclaiming “I am here now“. The willingness to be present where you are at has not only become counter cultural but it has become, what I would consider, a dangerously ignored way of living. Too often the geographical disparity between where we live, work, and play is such that we are left as scattered people living in five different relational and geographical spheres in a scatter-brained sort of way that does not cultivate a soil that is fertile for rootedness and growth both for individuals and as a community.

After laying on my back for what’s felt like weeks (has it been?) last night was my one last hurrah as I spent too much time at one of downtown Vancouver’s pubs for a birthday party and fund raiser for one of Vancouver’s finest. By the time I got home (after a couple of hours) I could barely move and my chest, leg, and sides were swollen and hard as a rock (though with all my normal exercise  this is pretty typical I’m sure…riiiight…) but what a way to enter into my final day of waiting for this surgery! I looked around this pub and saw person after person after person who were not just a part of an actual community, but people who had gone through a conversion of place. These stories are not mine to tell, at least not here, but they are powerful stories of individuals who have found new life because they (for different reasons) were able to lift their head up in downtown Vancouver and see the people around them. I probably should rephrase that somehow because I don’t think it usually happens on ones own. I don’t think the redemption stories of place often happen through one standing up straight and walking differently but rather it happens as one person catches the gaze of another and draws that persons eyes up to the place where they are at. Metaphorically we spend much of our time where we live, work, and play with our heads down. But the rockstars I spent time with last night had their heads lifted up (in one way or another) and are finding significance, meaning, and a life of sacrifice for the sake of others. They’ve had a conversion of place. I’m glad that place is downtown Vancouver. And while I absolutely love downtown Vancouver I don’t think it actually has anything to do with this specific place. If I lived in Camas I would hope to be able to be a part of the same conversion experience. It’s not just about the uniqueness and specialness of a place, it’s about the belief that there is something special about each and every person–that a place is simply a gathering of individuals–and that as we collectively lift our heads up and say I am here now we are actually recognizing the presence of each other.

So be present where you’re at. Be here now.