Friday, March 25, 2016

No Model

A couple of months ago a patient told me that I'm a role model, and it completely freaked me out. That is a ton of responsibility. I don't want to model anything other than my own behavior. How can I be a model for others, what if I have a recurrence? Will patients think they're going to die too? That we're all doomed? That's how I feel sometimes when tumor friends have recurrences. I don't want that on my hands. What if I just want to eat crap for a year and see what happens? You can't do that if you're a role model. When you're a role model you're held to a higher standard; there's good behaviors that you're supposed to exhibit. You're supposed to lead by example. That's a lot of responsibility, and it's definitely too much stress. I'm not trying to be perfect, I'm just trying to be me. And sometimes that means mimosas and scones. And what brain tumor role model would encourage that? (Sugar on sugar on alcohol?!) A naughty one. One that shouldn't be looked up to. 

A couple of days ago I removed my favorite Buddhist saying and replaced it with this.
I like to think I made it up, but probably not.
Last night, a friend helped me see that I am not other people's stories. That when I help, I don't have to own what people are going through. I can assist in a time of need, hold their hand in a moment, but allow and encourage people to continue on without me. It feels a little bit like accelerated parenting. Help people find their wings by connecting them to other people and ideas and resources. It's easier said than done, but it's a lesson we all have to learn. In life, we connect, even if we don't want to. There's these invisible strings that pull us together spiritually, emotionally, physically, and if you're dealing with heavy stories all the time, you can become tangled. Tied up. And that's where I was, in a balled up mess, until she helped me break loose. 

Someone asked me last summer, "What gifts has cancer given you?" And at first I wanted to blurt out, "A horrible case of paranoia." But then in an epiphany, I saw a slideshow of faces, of all the interesting, caring, brilliant people I've met because of my diagnosis. Many of the people, most actually, who read the blog, don't comment. They're private, but they can somehow relate to what I'm feeling, to what I'm going through. Some have had cancer, others are currently undergoing treatment, and most are healthy, but what I write has struck a chord in them. The biggest shame, is that there are exponentially more people who read this blog than engage. I wish people felt comfortable, and it's my fault for not facilitating it, to comment more, to create dialog not just toward me in private emails, but amongst each other. Maybe people don't realize it's easy to post anonymously, or use a pseudonym. 

I feel strongly that we have to be the change we want to see. And sometimes, eliciting that change is just talking. It's getting the information out there. It's discussion. It's provoking thought. We learn invaluable information from others, and I can't express enough the powerful conversations that I've had between patients. They have altered my view on various things, and helped me evolve. But the conversations are private, and I'm not at liberty to share. If only people could open up, even anonymously, we could all benefit. There have been many times that I stopped writing because I thought that my story, my thoughts, my experiences, held no value, so I didn't bother, only to find in private conversations with friends, that my views and stories helped them. So the next time you think you don't have anything to contribute, please think again. Sometimes it's not what you bring to the table, it's the responses that are elicited and the trajectory of problem solving, of piecing things together, with multiple minds, that blow us away. The most beautiful thing would be for readers of the blog to begin dialog even with each other. I field so many email questions, but what if a person chose to post a question in the comments, they could do it anonymously, and just see what people suggest for solutions, or just share their knowledge. The more we talk, the more questions will come up, the more problems we could address, the more we could educate ourselves.

I have grown by sharing my story. It has made me a better person. I took a hiatus because I became overwhelmed, but with the right tools, by setting some boundaries, I think I can continue, and be better for it. It sucks, but no one is going to set your limits, you have to do it yourself. Kinda like the dishes. Okay, that was dumb. But, you know what I mean. I could have shriveled away from the blog, and in essence, I did, but it would be a shame for me to lose the magic. It has brought me so much joy, revolutionized my damaged brain, given me hope, and love, and friendship.

Thank you for giving me space, and also encouragement while I was away. The most powerful thing I've heard lately, was, "Your story is enough." I never feel like I do enough, and to be given permission to own that as a fact - that I am enough - was powerful. I'm absorbing it. I hope you can except it for you too.

8 comments:

  1. "There have been many times that I stopped writing because I thought that my story, my thoughts, my experiences, held no value, so I didn't bother, only to find in private conversations with friends, that my views and stories helped them. So the next time you think you don't have anything to contribute, please think again. Sometimes it's not what you bring to the table, it's the responses that are elicited and the trajectory of problem solving, of piecing things together, with multiple minds, that blow us away"

    So well said !! (May we borrow it?)

    "the trajectory of problem solving ..." Goodness !!, how can anyone pin it any more succinctly !! ... thankyou J-Old !!

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    1. Yay! Absolutely you can borrow it. I'm so glad you like it! Thank you and thank you for commenting. :)

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  2. My dearest Coconuts! I've wondered where you've been and once again so appreciate your honest and vulnerable expressions/confessions! Having written Nick's blog while he was on his journey, there was always the underlying fear no one was reading my words, since the feedback was usually minimal. I realized my writing was therapeutic for me and just so happened to give his health updates simultaneously. I came to understand that people didn't respond because they just didn't know what to say. Even now, I hesitate to comment on other social media postings because although I've walked in their shoes, I still think my comments come out as ridiculous platitudes of nonsense. My responses never seem to convey the sincerity, warmth, empathy and love that I truly feel and want to express. And sometimes, there is a random stinker who will comment with some really mean words, which can deeply affect a blog author in continuing with further postings. Being candid with such a personal journey demands a level of bravery and thick skin.

    Since you asked for comments (I'm on a roll now), I have to say that I cringe whenever someone else, who doesn't have cancer, refer to cancer as a "gift". If one has/had cancer and considers the disease a gift, then I totally respect their perspective. However, we did NOT feel cancer was a gift. We did feel how we reacted to cancer as a gift. Our faith is a gift. Our family, friends, doctors, nurses, neighbors - all are gifts. Random acts of kindness are gifts. Our deepened love of life and each other are gifts. First Descents is a gift. But cancer will never, ever get any positive credit.

    I also love the statement, "Your story is enough." So very true! And on that note, enjoy your mimosas and scones - this is YOUR journey and I love that you have chosen to share it with us.

    Much love to you and your hubby!

    Criquette & Wacky

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    1. Criquette & Wacky, I love you guys both so much! And I love what you said. Thank you for writing that, for sharing. Yes - yuck! Cancer is nothing you can return. You can't exchange it. It's crazy when people call it a gift, like we're supposed to be grateful for the trials? That just makes me laugh out loud - the insanity of it. Your comment is so true, especially spoken like a mom. Cancer is no gift you ever want your son to have, to HAVE to deal with. You love the people that come into your life because of it, Nick didn't need the "gift" of cancer to be a wonderful guy. To life live to the fullest. To be grateful, and kind, and funny. I'm so glad you commented, I hope others feel comfortable sharing their views too. It's so nice to hear what others are thinking, and feeling, and what their experiences are. Love coming right back at you! oxoxoxoxox

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  3. "So Cal" PattiMarch 29, 2016 at 3:04 PM

    Jess, I've missed so much writing to you and hope that we can email or perhaps have a phone call before the year is over! Had a small stroke year ago and almost died of pneumonia! Much better now, just have a semi-paralyzed hand!
    I made it and you are still making it and we are strong, lucky ladies! I always read your posts and promise to keep in touch! Love, "So Cal" Patti

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    1. Patti, So great to hear from you! I'm so sorry about the stroke, and the pneumonia - how terrifying! I'm thrilled you're hanging in there. You are a strong woman, that's for sure. I would love to catch up. Just seeing your name on here made me happy. :)

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  4. So Jess, I am so glad to go to your blog tonight and see you had written lately. You warm my heart with your words. You write very beautifully from your heart and I often wish I was more verbose! Your strength is inspiring to so many, and me in that group, and I think that is ok to inspire others. So I just wanted to say thanks for writing...love you to the moon and hi to Dan!
    Becki Day

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    1. Becki, we love you so much! Thank you for commenting, I'm honored you read the blog. You are one of the hardest working, busiest people I know, so for you to take the time is incredibly sweet! I adore you, from way back in the day. You sure have seen me evolve. Ha! Sending you a big hug! xo

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