Sometimes life-events are so shocking or overwhelming that people react differently than they normal would. This change can be valid, and even necessary at the time, but when things heal or settle, there can come a time when safety mode is no longer effective, and can even be counter productive. That’s where I am.
It all started when I learned my new life expectancy. It actually makes me gag to think of that- “life expectancy”. It’s like putting a sales quota on a person’s life, but getting a discount on their timing. “Be a success, raise your kids, be a superpower in the world, fulfill all your wishes and dreams, make the world a better place, and… uh… hold on… I have a coupon here for thirty years or so off your life…”
That’s a huge challenge and a lot of pressure during a difficult time. So what did I do? I hedged a bet. I used everything I knew and everything I had, I put it all on the table and played my best odds at winning. If I was right, the payoff would be my best chance at life- quality and quantity- I wanted it all. I packed my family and my stuff and moved across the country to better weather and where I could be healthier and more independent.
I don’t regret that decision in-and-of-itself at all, in fact I don’t think I’d be alive right now if I didn’t. For someone with brain cancer, I’m about as healthy and almost as normal as possible, but my coping method did have side effects, and in that regard, I’m ready for a change.
What Happened and Why
During emergency mode in my hometown, everyone found out about my cancer. It brought out a lot of love and support from the vast majority, but I started to see some negativity, ignorance and prejudice too- mostly from strangers and people I didn’t know as well. Given that I was already stressed about my diagnosis, treatment options, effects on my family, and my life expectancy, I chose to cut those people out and be very selective with who else I let in. In retrospect, I think if I was still in my hometown, that would probably still work because I had a big enough inner circle there, but it’s not working very well anymore here and now.
My almost-exclusion of most new people became a problem after the move when I didn’t know anyone. I did make some friends but stayed closed off with most people. I didn’t want to be treated the way so many people had already shown me- writing me off, feeling sorry for me, talking down to me, looking to replace me, No! So I began to put up big blocks on most people. I did take risks and make a very small group of friends, but I limited myself on everything and everyone else. For example, I don’t talk to other parents on a team or at a school event very much because I don’t want to expose “the whole story,” or risk reactions that I’ve seen before. Now I exchange pleasantries and make small talk but keep things shallow and brief. The consequence is that I’m closed off and my family is sometimes too. Relationships formed like that are transactional, shallow, and fake. At some point you’re safe but does that even matter if you’re empty and lonely? I take ownership for my actions, but am looking to move on and wish I knew what to do about my self imposed identity crisis. I don’t want to be the Brain Cancer Lady or take people’s stupid hits but I can’t keep holding back. I want to do more things and meet more people but have some challenges that I need to come to terms with.
So obviously I need to mention what I already know everyone is thinking, “you don’t have to tell people everything, you can keep some things private..”. I know I can and that’s what I was trying to do, but things are different now. For example I take a lot longer to remember people’s names and once they’re there, they still jump right out of my mind pretty often. That’s challenging because in most conversations you address people by name and it looks disrespectful or like you don’t care about them if you don’t bother to address them by name. Other parents ask me who my kids are friends with and what am I supposed to say? Should I open my notes on my phone and read off the names or maybe describe them, even say where they live but not know their name? That makes me look really fucking stupid and unqualified to be a parent. But the only way it makes sense otherwise is to hand over my medical chart. This is only one of many examples of why I just put people in the Fuckit Bucket, but I am getting tired of that too. I yearn for more inclusion and need to stop hiding from myself.
I’m ready to take the risk of being more vulnerable for the payoff of living a more normal, open, and fulfilling life. I had an emergency mode reaction that stretched on too long and now I want out.
I guess my next step is to figure out how. I’m heading to a school event tonight and maybe I’ll find a friendly soul to have a real conversation with. Hopefully nothing weird will come up- the name thing was one example, I have more… I hope I can just push a little farther outside of my Once Safe But Now Limiting Zone and have some success.
I’m inspired by others and if you’ve gotten over something challenging in life I’d love to read your story. Please feel free to share your blogs, comments, and inspiration!
LahLa - Rubble Blossom and Brain Cancer Freeish 
Your story is one of great courage, I have huge respect and admiration for you. :O) x
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You warm my heart, Thank You! 😊
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Back at you 😊 x
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Are we so close to our inner selves at this time of deep mortal reflection that we need make excuses for ourselves? Indeed not. Mostly friends give up on my friendship primarily because I’m a mortality mirror so I found that women older than me get it and they provide depth of conversation and wisdom and just don’t take shit personally. Next is my interminable tardiness that becomes annoying and I’m just not that reliable with all those appointments and girl down days and fatigue. Finally, I’ve encouraged two of my friends to live as themselves and because of our discussions and my initial excursions out with them for courage one is a cross dresser near full time and the other is 100% transgender. Both live their lives differently now and have little room for a gender solid chock hanging around. My stepsons are both so dizzied with the ravishes of their mother’s narcissistic abuse and parental alienation that we see them so rarely now that it’s honestly weird. They lived with us 50% of the tim3 until my diagnosis then one lived here full time for two of the first three years since my diagnosis with a mandate to spy on my husband and I including stealing mail, photographs, audio recordings, theft that he’d commit but when he was alone with his dad would blame on me. It’s been a truly fun ride inclusive of my aunt not wanting to upset my mother and not allowing me to know where she was or see her before she passed away two years ago and then my brother colluding to keep me away from the funeral or telling me she even died so he could control the money.
Given my husbands long term depression I’m pretty much on my own. I live in California and my old friends and what remains of my family live in Florida or further north on the east coast. I hate the phone so text works so much better when I don’t know what time I might even get up since my bed times gotten to the 3 – 4 am zone due to my own occasional insomnia and hubbys continual sleep challenges.
Cancer is a lonely plague. It leaves us with each other. You really should try to find your local cancer support center. Since there’s one in my area I went when I was first diagnosed. The moderator punted me from the breast group to the surviving with grace metastatic group, which paradoxically was way too close to the bone for me. I do have several solid girlfriends with whom I spend time but they’re newer to the team and I’m perfectly fine with that. No explanation needed since they stuck around and even visit me when I’m in the hospital. I should go to yoga which is free through Stanford as well as a bunch of other very good programs I don’t take advantage of and should. I should volunteer, I wish I could work again, and I mostly haunt my halls when most people are asleep!
One week a year around this time I try to get away for 10 days to a cancer retreat. One was amazing the other a happy ending to a really unbelievable scam that I uncovered with the angels who ran the La Casa De Maria in Santa Barbara. This year I’m just not certain yet but I’ll go somewhere. Soon, or I may implode.
Having a vintage / antiques community of interest helps, but not for much other than an occasional afternoon of delight out of the house and into the world.
No real upside I am afraid. It’s up to us, really. There’s no secret to it, I know I need to get out there more than I do, but the psychic and physical energy seem just too much to exert some days. Just in time to talk to my palliative oncologist about my fatigue again.
C’est la vie en rose.
🖕🏻cancer
😘
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It’s nice to read more about you and your life, perspective, and experience. I stumbled onto your blog not too long ago and started reading mostly from the present. That’s the only thing about blogging I question at times because some things are foundational for stories and perspectives to come. Yet I love that blogging has some in-the-moment topics and doesn’t have to have a linear approach. In that regard, it’s kind of psychological because some topics emerge on their own timing. Anyway, I reflect on that because I’m getting to know you more each time we share and am grateful we connected. I had rejected support groups out of my rejection of being defined by cancer but, through my journey am realizing I didn’t need to- or don’t need to anymore. I like reading blogs from others living with cancer so I probably would get something out of a live, local group. Thank you for suggesting it. I hope you have a perfect balance of your energy today- doing things you enjoy and enjoying the rest you need. I strive for that and it was hard to justify when I needed rest but now I look at it as fuel and often engage in things I like but take less energy, for example I’m starting to learn Adobe Illustrator techniques and getting some creativity going. Sometimes I just sit in bed with the computer and am mentally but not physically active. The evolution of my framework of “activity” was helpful. Have a wonderful day! 😘😊🌸
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