The Pain of Receiving

Posted on by
2

People have been incredible. People have been so incredibly generous to our family. From various doctors who have served us at a discount or even for free to local business owners that want to give us their products at discount prices. I could go on and on about how generous individuals have been but the reality is that most of those people would probably be very angry at me for doing so…which again shows how great these people are: they want to give while also remaining anonymous! People really have been incredible and they all deserve a huge and sustained ‘thank you’. This is not enough, but thank you so much all of you who have cared for our family in amazing ways. We love you all so much. But…it might be awkward to throw a ‘but’ in here…but, all your generosity is kind of driving me crazy! Wait, wait, wait, don’t judge me yet. Let me explain.

Driven Crazy

Like I said, I’ve got to be honest and say that at times people’s generosity drives me crazy. No, I haven’t become an ungrateful and jaded person. What I want to say here doesn’t fall under the whining and complaining category (at least I don’t think it should). The reason that at times I’m driven crazy by your generosity is that I’m terrified that I’m going to become that person. You know who I’m talking about–that guy who thinks he is entitled, who says ‘thank you’ only insomuch as it warrants him a second dose of generosity. You know that guy. I’m terrified that I’ll stop being grateful, that I’ll start assuming people are going to give me a discount or even something for free. I’m terrified that I’ll stop trying to pay for my half of the bill when we go out, that I’ll start assuming that you’ll buy. It freaks me out to think that this could happen…and so I want to pay! I want to buy your coffee when we go out sometimes. I don’t want you to give me a discount because I don’t want to train myself to think that you’re always going to give it.

Another reason why I’m driven crazy by your amazing generosity is that I want you to know that what you’re giving me for free or at a discount is of incredible value. What you’re giving me for free is incredibly valuable. Whether it is a shirt, a cup of coffee, or a service, what you’re offering is something that deserves to be paid for. I want you to know that I seriously value what you do/make/sell. It’s worth spending money on. It’s worth spending my money on. I appreciate that you’re being so incredibly generous, but you must know that sometimes I want to give to you too! Sometimes I want to buy your coffee ’cause I like you and want to bless you. I want to buy your soap ’cause I think you make a really great product and I want to support your business. I want to pay for your service ’cause your a great technician and I want you to know how much I value your time and what you do. You are amazing and I want to throw my money at you!*

So I’ve said it. I’ve exposed myself to the world and given everyone reason to hate me. You’ve seen my ungrateful side and you might walk away from this blog thinking that I’m not appreciative. But I hope that you don’t. I also hope that you do not walk away from this blog thinking that I don’t want your generosity. That’s not what I’m saying either (shoot, it’s because of many people’s generosity that we’re even able to make it financially). No, more than anything what this blog is attempting to capture is that virtually everything has another side to it; virtually everything has a messiness to it; virtually everything comes at a price–even if it’s a very small one. What I’m attempting to do here is to invite you into our experiences as fully as is possible. The pain of receiving may not be much but it does exist…right?…or am I off in this?

What costs have you had to pay when giving or receiving?

 

*  Let me say one more time that we feel incredibly indebted to you all. There is no way we can ever say thank you enough to the cloud of people who have cared for us and given to our family. We don’t ever want anyone who has cared for us to feel like we don’t value their gifts. The reality is that we are so overwhelmed by people’s incredible generosity that we often don’t know what to do. You all are beautiful and wonderful people and we wish we were better at saying thank you and showing you our gratitude. Thank you for your love, for your creativity in how to love us, for your testimony to our two children of what love looks like, and for your clear sacrifice in giving to our family. Thank you for who you are and for how you care. Thank you thank you thank you.

Article: The Things I Wish I Were Told When I Was Diagnosed With Cancer

Posted on by
3

I cannot express how dead on this article is. I think I can confidently say that the author has captured my experience exactly–and has captured it in a way that I have not been fully capable of doing. Please read it, soak it up, and know that Mr. Tomczek is speaking on behalf of many of people. (you can read it on Huffington post here: http://su.pr/2SBve7)

The Things I Wish I Were Told When I Was Diagnosed With Cancer

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it “chemo brain” for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they’ll forgive you. They get that you’re going through something they can’t imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren’t so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world — strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven’t spoken to since grade school will be in touch. Ex-girlfriends, former colleagues… even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won’t believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You’ll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You’re going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You’ll be more productive. You’ll understand who truly loves you because they will still be there. You’ll want to meet new people that connect to the newly evolved version of your old self. You’ll want to let go of those that don’t “get” who you are now. You’ll feel a little guilty doing it. Then, you’ll move on. You don’t have time to waste. The greatest gift you’ve been given is that you now understand that and you’re going to make the most of every second. You’re going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

For more on cancer, click here.

For more on Jeff Tomczek, click here.


Do I Want to Die?

Posted on by
5

After getting our first good test results (ever) two weeks ago I went into a pretty deep depression.

Seriously.

Getting the good news sent me into an emotional nose dive that I still find myself fighting against succumbing to it.

That’s right, I was sad to find out that I might not be dying as soon as I thought.*

It took me a while to understand what was going on–why would good news bring about such negative emotions? Why was I feeling so lost at a moment when I should have been in the throes of elation? It just didn’t make sense until I realized something. I realized that after a year of living in complete ambiguity, never knowing what to expect from one day to the next, never being quite sure if I was surviving or actively dying, and never being able to count on functional health from one week to the next it didn’t matter whether it was good or bad all I craved was being able to count on what to expect for tomorrow…even if that was death. Living in that in-between place for so long was miserable and taxing and…well…when I got the diagnosis of 3-6 months, as terrible as it was/is, at least for the first time in a long time I knew where I stood. Sure I was dying, but at least I knew what to expect!

I don’t think this was a conscious thought necessarily, I don’t think I would have been able to actually articulate that I was glad I was dying. But what I discovered was that when I got the positive MRI result it immediately called into question the very thing that had been giving me solace. I don’t think I knew that I had been taking so much comfort in knowing what to expect until it was lost. Now let me quickly clarify that without a doubt all of this is an illusion, all of this is about perception not about reality. We cannot ever, in fact, know what to expect concerning tomorrow! (right?) And to make it even more silly is the fact that my good MRI scans do not even change anything about the 3-6 month projections in the slightest! In reality what these new and exciting scans do is powerfully remind us that there’s always hope.

And so I sat in bed sick (from those blasted UTIs) and sick (from those blasted emotions) trying to figure out why I felt the way I did–feeling betrayed by my own emotions, feeling confused by the strange feelings that were emerging, and annoyed by the fact that I was such a mess. Things would be more simple if I were just dying…right. I know, I know, you don’t want me to say that (and you definitely don’t want me to mean it) but the complete and honest truth is that the draw to normalcy, to consistency, and to clear expectations is a koolaid that’s easily drunk. Even if that koolaid is to die from cancer.

Again, there is no question whatsoever that the reality is that we’re all living from day-to-day, that those of us who think we can do life without the messiness of the unknown are living in denial, and that uncertainty or ambiguity is a part of being human. But oh, don’t we crave control?! Don’t we crave even the illusion of it?! Apparently I’ve been craving it so much that even death had an appeal simply because I could count on it!

I’m choosing not to write this blog from the perspective of “and now I’m all better”, “that was then, this is now”, or “I’m so glad I got over that”. The truth is that it’s still hard. I’m still fighting the sickness daily (both the emotional side and the actual infection side). Hopefully I’ll be better soon. Hopefully (and this would make all of this so much easier) the cancer will just go away and I can be done with all of this for good…don’t you think that would be ideal?

 

* Though the doctor was clear that while this gives us great hope, it does not directly change our timeframe.

Video: Conspiracy of Love

Posted on by
7

As I attempted to say in my last post (though I was clearly not able to find adequate words to capture it), a collection of beautiful people came together in the last month to paint a neighborhood mural. While the mural was partially in honor of our family, it was more accurately done to bless the entire community. The intent, as I am told, was to give something to both the community and to our family–or better said, it was by giving to the community that these people felt they could most effectively give to us. Our friend who headed up the project said that her intent was for it to partially capture an end result of our work, passions, and dreams. It was the action of all the neighbors coming together creatively that was actually the gift to Jess and I while it was the end result art piece (the mural) that was the actual gift to the community. I think she’s right.

One of of the subversive participants in this project put together this video of the murals creation. It makes me jealous that I missed out on the fun of secretively painting together with friends…so I kind of hate this video…but I guess it’s still worth watching (please know I’m joking)…

Blessed to be a witness

Posted on by
7

Oh where do I start? I am blessed. I don’t always feel that way, but today I do, today I feel overwhelmingly blessed.

I was blessed to be invited to fly to Rochester, MI for the Streaming Conference at Rochester College. It was an amazing few days where Jess and I were bombarded with incredible information from renowned scholars who invited all of us attending to love more radically through the simplicity of hospitality. I was blessed to see many old friends and to meet many new faces. I was blessed to be able to share some of my own story about living in awareness of my own bodies decay, about its clear fragility, and about the implications these realities have with regard to hospitality and community. It was an amazing few days and I feel blessed to be a part.

I was blessed to travel with my partner in life. Not only did she do all the heavy lifting, but she’s also great to cuddle with on a cramped airplane. There’s no better person to sit in an airport with than Jess.

I was blessed to come home to my beautiful children who were eager to be with us on this, their first day of Summer vacation. While Jones was upset that he wasn’t allowed to stay in his jammies all day and build Lego’s, he did overcome quite well–even ‘allowing’ us to eat dinner at Edgefield.

But more than anything today I am sure that I am overwhelmingly blessed to be a part of the downtown Vancouver community. There’s no way to define what this community is nor what it is becoming…yet. There’s no way to capture who exactly it is and what the boundaries clearly are. The lines are all blurry, the impetus for togetherness is not easily understood. But there is movement happening–there is A movement happening.

Today we were surprised by forty of our downtown friends by a mural that they had been working on for nearly three weeks with the utmost secrecy. They painted until nearly 1am the last two or three nights in order to finish in time to share it with us today. It is amazing. I think it’s supposed to be a tribute to our family, but what they’ve really done is they’ve captured our heart, our passion, and our dreams of Vancouver. The paint on the wall partially captures who we are, what we love, and what we want to be all about–but I think it’s the actual event itself that truly brings me to tears. Friends from every nook of our downtown life came together in one big communal mess to work in partnership in order bring beauty to our streets and to bless someone they love. Does it get much better than that? Bringing art to our neighborhood? Blessing someone they care for? Developing new friendships? Creating new partnerships? Engaging in subversive acts of beauty? I mean, it seriously doesn’t get much better than this now does it?! Oh yeah, and did I mention that the design itself is hugely meaningful too? Yeah, there is that part too now isn’t there! The image is perfect (though as of yet incomplete I’m told) as it captures some of the iconic downtown Vancouver buildings (including our home!)–and yet, as you can tell it is not the buildings that is bringing life. No, for the Grassroots Conspiracy movement it’s not about buildings but about what they represent. Life is emerging all around and throughout those buildings–in the image those buildings are being covered by life and light in the same way that I believe/dream/hope that our downtown movement sees life and light envelope all that is ‘us’.

…and I love being able to say (as I’ve said a few times over the last year or two)…it’s happening. Life, light, movement, hope, community, meaning it’s happening. And I’ll be pissed if I don’t get to stick around long enough to see even greater things than this emerge.

I am so so blessed.