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Who do you talk to when things get weird? Do you have a person to whom you can turn when you need to figure out some complicated thoughts and emotions? What do you do with the unspoken ideas and concerns that you’re processing when you have time to yourself?
I ask because I have the benefit of some really good counselors, and it makes all the difference in how I navigate my fight. I was reminded of their impact this week when I had a tele-med appointment with one of the social workers from UCBC. We were scheduled to talk about some rather personal issues—let’s just say that chemo and cancer have unintended side effects that no one warns you about—but by the end of our time together, she helped me address some truths that I’d not really accepted.
One of those truths was the process of medicalization; the systemic yet unintentional dehumanizing of my body due to the need for doctor’s to constantly poke, prod, and withdraw things from me in order to stay ahead of my condition.
For the past year, I’ve basically been a lab experiment, a specimen that my doctors have had to study in great detail, even though it means the invasion of my personal space and the loss of my agency. To put it another way, I don’t get to say no to a lot of the things that the doctor’s do to me. If they determine that it’s medically necessary for me to give them four vials of blood every time I enter the office, then I have no choice but to offer them a vein.1
The psychological toll is significant, if not exactly pronounced. I made the choice going into treatment that whatever the doctor’s recommended I would do, unless it seemed way out of line or experience gave me reason for pause. So I’ve not thought about being “medicalized” in any way; I’ve just done my best to be a good patient and let the docs do their thing.
But it’s manifested itself in a particular way that is noticeable, a way that is pronounced: I have developed an aversion to people invading my personal space. For this to become pronounced tells you how significant the issue is; as an introvert, it’s not unusual for me to be protective of my bubble, but I’ve always been generous and open to Rachel or the kids breaking through for a hug or a touchpoint because I love them and want them to feel they are loved.
Thanks to medicalization, however, I’m not as open to those physical moments these days. In fact, I sometimes struggle to breathe when people invade my space and want to hug or hang on me. The counselor said that this was common for many cancer patients who have to undergo continuous treatment; the body shuts down receptivity to touch because too much touch is going on.
That’s the second thing she helped me understand: that shutting down is me disassociating from my body, entering a protected mental space that keeps me from feeling everything that’s happening physically. The disassociation can be conscious or unconscious, depending on the circumstances, but it usually looks like me getting lost in something, drifting away from the moment in order to recover my sense of control.
Control is a big issue for me. I’m not what I would term a control freak, but I certainly like having a sense of awareness, a sense of knowing that’s part of my personality and wiring. That drive is what makes me an effective researcher, writer, and communicator—I want to know what I’m talking about.
Cancer has taken control away from me in so many areas. I have no say so over what the disease does; I have no power over how my body responds to chemo; I have no influence about which side effects I’ll feel or when I’ll feel them or how intense they’ll be; I’m essentially at the mercy of the process in a number of different ways. That doesn’t make me a victim, or render me powerless; lack of control doesn’t equal a lack of power or agency.
I am still the master of my perspective, my attitude, my outlook; I’m still in control of how I talk about my situation or how I talk to myself. The truth is, I still have full control over the things I’ve always had control over. Cancer has simply shown me the things I’ve never had control over, and reminded me of that truth.
It’s surprising how philosophical an illness like cancer can make you.
I’m philosophical to begin with, but when your day-to-day experience includes facing your own mortality, dealing with the fragility of life, and contemplating the impact of your existence on the world around you, it’s easy to start thinking on a much deeper level.
The best summary of how this feels is a James Clear quote I read this week: “To get more, focus on less.”
Cancer forces you to focus on less. Paring down your life to the essentials, the things that matter, can be quite a task for some. For me, because of the spiritual journey Rachel and I have been on for the last several years, the experience wasn’t difficult. It was almost instinctual for me to know what areas of my life needed (required) what energy and attention I could provide:
My health.
My marriage.
My family
My work.
My creations.
Everything else fell by the wayside, either right away or eventually. I’ll confess that it took me longer to quit caring about politics than it took me to quit caring about sports. It took me longer to get over “church” squabbles than it took me to get over the latest movie news.
But I got there.
And when I did, my life got immeasurably better. The nurse who comes to my house once to a month to check on me2 told me on Thursday that I was the most joyous person she’d ever encountered in her years of treating cancer patients. She said there was a wave of positive and joyful energy that washes over her whenever she comes to visit, and she said that it was a blessing and a gift for her because it always resets her perspective for the rest of the day.
It’s not because I’m special, I assure you. It’s because the stuff that occupies my heart and mind these days are the things that are most important to me. They are the things that make me who I am, so I am living a more authentic, more genuine life than ever before because my focus isn’t divided by things that don’t ultimately matter.3 For the first time in my existence, I know what is truly important, and nothing can talk me off of those things.
If you’re wondering why my faith isn’t one of my primary areas of focus, it’s because my life is my faith at this point. My theology and belief has never been more integrated into my daily living and breathing than it is right now, so I no longer see my faith in Jesus as a separate thing to be worked on. I’m focusing on my faith by living my life according to the principles and teachings that I’ve learned and taken to heart over the years. I’m not worried about keeping anyone’s rules because I’m in daily, continual conversation with God, and He’s keeping me in check.
But I digress.
The point of this is that when you declutter the stuff that occupies your mind and heart, you declutter your soul and find yourself renewed the way Paul wrote about in Romans 12. It’s an example of the paradoxes that Jesus taught: the first are last, the last first; the poor are rich, the rich poor; those who think they know are ignorant, those who are ignorant are privy to the truth; those who try to control their lives lose them, while those who surrender control find their lives and find them blessed.
None of this is stuff you can learn like subjects in school; this isn’t math or science, or even English lit. This way of life is less scholarship and more art. It’s a way of being that transcends the myth most of us life by, that if you’ll just yank on your bootstraps hard enough, you can manifest your destiny like some sort of mini-god.
We’re only human. We need help. We have tremendous creative power, power that enables us to live a life beyond our wildest imaginations, but we cannot do it alone and we cannot have control over the process. That control belongs somewhere else; the control we have is within our mind and spirit, and yet that’s exactly the place where so many people forfeit control. They would rather attempt to manage their circumstances, take the world on their shoulders, and let someone else do their thinking for them.
I lived that way for a long time. It’s no fun. And it does not produce life.
Surrendering control of circumstances to God, to my Father who loves me, and taking control of my mind the way Scripture teaches, that has produced the abundant life that Jesus talked about in John 10:10. And I’m a better person for it; or, that’s the impression that I get from the number of calls and texts and emails and social media contacts that I get on a regular basis. I told Rachel the other day that it’s been an unexpected but wonderful blessing to hear from people how I’ve impacted their lives in some way, how I’ve blessed or helped them on their journey.
I’m so thankful y’all didn’t save the kind comments for my funeral. That old expression is true: it’s better to give people their flowers while they’re living. You have no idea how wonderful it makes others feel when you genuinely tell them how they’ve made a difference in your life.
And when you hear how living a surrendered, focused life makes a difference to others…it makes you hungry to live that way all the more. It instills a desire in you to stay focused, to stay surrendered, and to live honestly.
There’s true soul fuel found in kindness.
The conversation with the social worker/counselor was so helpful this week because it gave me permission to continue living a life I enjoy. I understand that if I feel overwhelmed when people come to me for hugs or affection, then that’s okay. But the answer isn’t to avoid hugs and affection—it’s for me to initiate it. For me to give when I’m ready to give, and not force my family to come take what they need.
When she first brought that idea up, I was a little bumfuzzled.4 If my body and brain are broken from having to give so much at the doctor’s office, how in the world is the answer for me to give even more?
But I was looking at it the wrong way.
The issue wasn’t the giving; the issue was me choosing to give.
I don’t really have a choice when the needle comes calling, but I do when it comes to hugging my wife. I can give her hugs freely whenever I choose and it doesn’t cost me anything because I’m giving from my emotional surplus. I’m giving out of the abundance of my heart, which I have because I am surrendered to God and taking control of the right things in my life.
The whole point of living surrendered is so I have love to give away freely—to Rachel, or Ella, or Jon or my friends and family who just want to check in on me and see how I’m doing.
My infusion appointment is Tuesday at 8:30AM, so I’m expecting to spend some quality time in the chair, provided my white blood cell count is solid and there are no other issues the doctors see. My weight is still not back above 130 yet, so that’s a bit annoying, but this FOLFIRI chemo is no joke. I told a co-worker the other day, I’d take the worst of any one side effect if it would just be that one side effect. Instead I’m apparently getting to play “Side Effect Roulette” and experience all manner of fun inconveniences.
But that’s as much as I’m going to complain about it. It’s keeping me alive, it’s keeping cancer at bay,5 and it gives me the one thing that matters more to me than anything else in this world:
More time with Rachel, Ella and Jon.
I choose to do whatever it takes to extend my time with them. To hear them laugh. To watch them grow. To experience the world through their eyes. Being with those three people is the greatest joy of my life, and they are the greatest loves of my life by far. The rest of y’all are great, but no one else comes close to the position that those three hold in my life.
And that’s why I’m fighting like hell to stay around, stay present, and stay focused.
Here’s how you can pray for us this week:
Jason—for treatment to happen on Tuesday; for the side effects to either get consistent or get gone; for my interview with Newsweek on becoming a featured expert for the magazine; for continued focus; for continued work on being present with my family by choosing to give of myself.
Rachel—for sleep; for strength; for stamina; for encouragement of her soul; for continued patience as the family chauffeur; for her health to remain strong.
Ella—for finals season which is coming up soon; for her company’s performance of Aladdin in May; for the chance to reschedule her learner’s permit exam (the DMS system was down the day she originally scheduled so she couldn’t take the test); for her to learn safely and slowly how to be a good driver.
Jon—for his performance as Peter Pan in his school’s play tomorrow morning; for his continued growth and development as a tween; for his imagination to continue to expand and develop; for him to continue discovering his true interests and talents; for his birthday, which is this coming Saturday, May 1.
My final thought for the week is a simple one:
The story is more important than the ending.
That’s something the counselor said to me regarding some thought patterns that I was struggling to let go. She said that often we hold on to bad thought patterns because they are a story we’re telling ourselves and we haven’t yet reached the end. We hold on because we struggle to release ourselves from the ending.
But the ending of a bad story doesn’t matter. A bad story is a bad story, no matter how it ends. It’s much better to spend our time invested in good stories, and living those to the best of our abilities. When we live out good stories, we don’t have to worry about the ending either, because a good story is a good story, which includes a good ending.
I don’t want to break it down much more than that (to be honest, the idea resonated with me, but didn’t seem fully thought out the way she presented it), but I do want to remind you that your life is a story. The thoughts that go through your mind will in large part determine whether or not the story you live is a good one.
If you’ll spend time focused on thinking good thoughts, you’ll inevitably end up with a good story. Spend your time trying to live a good story and there will be some bad thoughts that come along and rob you of what you really want.
Control what you can control. Focus on your thinking, live a better story.
Despite my cancer, I am living the most incredible story I could imagine. It started nearly 20 years ago when Rachel and I said “I do”, and it’s been a challenging but worthwhile journey ever since. It’s gotten even better over the last decade or so, and I only see it getting even better from here.
I’m not worried about the ending as much these days, because the story is more important. I want to live my story to the fullest, and when the ending comes, I’ll let God worry about it.
Here’s hoping you can say the same.
Thanks for reading!
Best,
Jason
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Fortunately, they are able to draw blood through my chemo port most of the time, so there’s not a regular need for me to roll up my sleeves and get poked. Still, accessing the port does require a needle stick (though I have a cream that numbs the skin around my port so I never feel it), and it does require me to give up the liquid that keeps me alive. I don’t mind doing it, but I can see the counselor’s larger point: I’m at the mercy of medicine, not free to choose my own path, and that wears on the mind and soul.
She takes my vitals, assesses my physical state, and performs a general psyche evaluation.
I won’t lie; this has been greatly aided by the fact that Joe Biden is our current president. The previous occupant of the White House was someone I struggled with significantly, for a host of reasons. I might not have been able to give up politics had he returned for a second term, and that would have made me a perfectly miserable person to live with. Just ask Rachel.
That’s redneck for “confused”.
That’s my confession of faith. We’ve not done scans or anything to check effectiveness thus far.
Jason, you continue to amaze me with your knowledge and maturity..and your “story telling” of your day to day life.. I pray for each of you to sense God’s presence and direction..
Mr. Brooks, our family has been so blessed by your writings! Maris dances at NEAB and we love seeing Ella dance! I read your blog and share it with Maria and my oldest son , Luke, who is 17. Thank you for the encouragement and wisdom you share with us, for sharing your life with us...we keep you, your family and your intentions in our prayers daily.