You might have noticed that for the last several weeks I’ve posted one new blog article a week or two. In the last couple years I’ve spoken with people about my vision for Karen’s blog as time goes on, and the one thing that is always on the top of my mind is that I want our experiences to help other people. Karen wanted that. I want that.
I’ve written a new blog article almost every week for the last five years, but posted only a fraction of them. Most end up being deleted. Some are saved for future refinement. Some include things that seem too personal to ever publish, but so meaningful that I can’t delete.
Karen had a couple year struggle with Primary Peritoneal Cancer. She went through many things. I went through many things. And we went through many things together. But one of our driving principles was that we could turn ANY challenge into an opportunity. We did this in business regularly. I’ve spoken of this previously, and also of my struggle to make this true with her battle. But the ONLY way that her struggle can do this is if I share the stories, and if those stories actually help others.
I struggle with the task of turning Karen’s battle with cancer into something that can be inspiring to others in any way that offsets what she went through. I don’t see a way that my telling of the stories can ever balance that scale. I’d let the entire world burn just to have another day with her, so I struggle to convince myself that anything I do now with the blog makes enough difference. Especially when I delete so many of my posts.
But the choice about trading the world for another day with her is not given to me, so I have to play the hand I’ve been dealt, which means that I need to work to try to share stories and advice (even if unsolicited) if I have any chance to help others, as Karen wanted. And I need to force myself to publish more of the posts that I write.
Ahem. Big pause.
Many of the blog articles that I write weekly get deleted, because I weigh the risk versus reward calculus. If I publish this blog article will it help others? Will it hurt the people I care about (even though it’s not about them)? In the past I’ve often decided that it’s easier to hit the delete key than it is to risk hurting feelings. I have expressed that I don’t have any criticisms of anybody who reads this blog, but that doesn’t mean that it wouldn’t seem like I did.
But well, shit. My sister has cancer. And it has spread to her peritoneum, like it was with Karen. She is battling a cancer very similar to what Karen battled. Fortunately it was caught earlier, there are newer ways to treat, and the doctors are more optimistic than they were with Karen. But my sister still has cancer, and will be fighting a similar battle, struggling with many of the same things that Karen did.
Well damn.
I have first hand experiences that can help my sister and those around her. The stories I need to tell might not be intended for her to read, but for the people who are around her. Suddenly I wish I’d published every last article that I deleted. I wish I had kept the blog articles that I wrote, but deleted because I thought it might be “too soon” to publish.
Moving forward, I’m going to post more of the articles I write. I may post some that I wrote as long as six years ago. I don’t want to cause anybody pain, including myself, but lessons we learned are being shelved, and I’m not helping anybody if I don’t post them.
Advice
Hold on a second… I used some foul language in previous posts and intend to continue that below. If that offends you, then please stop here. Those that know me best laughed out loud when I used it, and they took it in the way that it was intended. If you don’t take it the way it’s intended, you will be offended by what follows.
You’ve been warned.
Advice
Don’t do it. It’s addictive. The first time is free and it feels great, but then it becomes a habit, then it fucks everything up.
I’d like to start with some personal background about Karen and me. We hated advice, and I think justifiably.
Karen and I started a business together before we were even married. We fought hard to make our “hobby” business into a real business. I’ll skip telling about the things we did, or how hard we worked, and skip to the part that relates to advice. And that is that everybody wanted to give us advice on how to do our business. People would learn that we were running a business out of our spare bedroom and tell us that “you should” do this, or you should do “that.” They couldn’t understand our profit model so they instantly said it was wrong, and that we would fail.
YOU SHOULD… YOU SHOULDN’T… These were the words that our ENEMIES spoke to us. We related those word to people that didn’t want to take the time to hear what we thought we should and shouldn’t do.
Those fuckers wanted to tell us what we needed to do, so that we fit into what is “normal.” Karen and I considered what they said and then told them to fuck off, and that we’d find another bank (or whatever) who could see the big picture.
Karen and I had the opportunity to tell a lot of those givers of advice to fuck off after they came back and said they wanted to work with us later, after we achieved the things we said we would. I take great pleasure when I get to tell one of them to fuck off, even now, years after her passing. Our business has a permanent “fuck you” list, and every once in a while we still get to let the person/business know that the “fuck you” is coming from Karen, and we feel really great that we are getting to deliver it for her.
Karen and I knew what we wanted. When we were willing to accept advice we asked for it, which we did regularly. The people who wanted to see us succeed were willing to listen to what we thought and worked to build us up, instead of simply forcing their ideas upon us.
The business that Karen and I built got to where it is today by telling people to “fuck off” when they tried to tell us what to do. Our business is the world leader in what we do. We got there by ignoring unsolicited advice.
In summation, we knew what we wanted to do, had lots of people tell us what they think we should do. We ended up doing what we wanted to do and later got to tell them that they were wrong for not supporting what we wanted to to, right before we told them to fuck off.
BUT…. the situation changes when the advice is coming from somebody you’re not willing to say “fuck off” to. And it becomes a lot more complex.
Advice and Cancer
Friends give each other advice. This is normal. We do it every day with the people we love. You should try this yoghurt (yuck!) or you shouldn’t use this mechanic for your car. Great stuff, even is we disagree.
When a loved one is diagnosed with cancer, we all want to provide an option that leads to the magic cure. I struggled desperately to do so.
But advice doesn’t just come from close friends and family. It starts coming from everybody, and the emotions are different for the different circle the person is end.
Karen was initially treated at the Zangmeister Center in Columbus. The center was FANTASTIC in how they treated us. The Zangmeister Center is phenomenal!
But when we went out and spoke with people, many would tell us that we “shouldn’t go to Zangmeister because they are small and that you need to go to the James Cancer Hospital, because everybody knows they are the best,” or “don’t go to Zangmeister because my sister went there and you should instead go to MD Anderson,” or much more common we’d hear “you need to” look into this special treatment in Mexico or “you need to” look at CBD as an option, or that “I hear they are doing great thigs in Greenland, so you should investigate those options.” Everybody we spoke with had an opinion they wanted to share in some sort of advice.
Oh my fucking god (small “g”). And this is coming from people you respect enough that you don’t want to say “fuck off.”
Try to imagine that you are taking chemo. You get to taste every meal twice and you feel the worst that you’ve ever felt in your life. But you want to pretend that you can still lead a normal life. You still try to see people and act normal. And everybody wants to tell you what you should do (“you should,” or “you shouldn’t”), INSTEAD OF listening to what you fucking tell them.
We did try to take people’s advice for a while. For example, we tried the James Cancer hospital, and I curse those fuckers to this day. It was the worst possible experience out of all the experiences that might be possible. I apologize if you were one of the many that made that suggestion. I wrote a lot more of my thoughts about them, and then deleted them. I don’t have anything good to say about the world famous James, and wish death and destruction upon some of the personnel. Enough said.
Later in Karen’s struggle we started ignoring all unsolicited advice (perhaps including good advice). But here is where the “O” word comes into play again. When a friend suggests that you go to the James, and it’s already been the worst experience in your life, what do you say? When a friend tells you to look into the treatments in Greenland, and you can’t find time to sit at your computer between chemo, trips to the bathroom (when you can make it) and are otherwise struggling to do anything but lie in bed. What do you say? Do you say that you were so fucking messed up that you couldn’t look into it. Or perhaps you say that you didn’t look into it because it was a silly idea. Either of those, or anything in-between makes the patient and the advice giver feel bad.
Advice sucks, even good advice.
I struggled with the James Cancer Hospital advice, because our experience was so bad that I would have been happy enough if the place burned to the ground, including all the regional centers. Yet people constantly told us that “you should” go there.
People give advice. Sometimes they do it because they are an expert or have anecdotal information that suggests they should, but other times people give advice because they want to feel important.
Do you feel compelled to give advice? If so, why do you feel compelled to do so?
Is it To Listen or to Solve?
Women generally know all about this concept. It doesn’t wholly apply here, but the concept is close enough to warrant mentioning. I’m a guy, so had no clue about the need to size up the purpose of a conversation until I met Karen, and she taught me. People enter into conversations with different intents. One person may want to start a conversation to share a burden, while others enter into a conversation looking for a solution to a problem.
Miscommunication about the desired intent happens constantly with spouses. I’m fortunate that Karen and I addressed this very early in our relationship. Not only were we husband and wife, but we were also President and Vice President of our business. Sometimes we needed to speak as husband and wife, sometimes as President to Vice President. Sometimes we needed the other to listen, and sometimes we needed the other to help solve.
Early on it was a challenge, but we started declaring our needs when we started conversations, and that really helped us. Yes, boy scout’s honor, Karen and I would say “honey, I’d like to have a chat, husband to wife,” or “just need somebody to listen.” No, we weren’t always that way, but it sure was great once we figured out it was a thing we could do.
Somebody struggling with cancer will give cues about their needs if you’re willing to listen. If they want advice from you, they’ll ask. If they want a shoulder to cry upon, they’ll do so. Concentrate upon them, and not you.
That doesn’t mean that there isn’t room to offer information. There’s a world of difference between saying that “you should check out the options in Greenland” and that “by the way, I’ve checked out the options in Greenland, and some of the treatments for your type of cancer seem to have a high success rate, and I’d be happy to check into it further if you were interested in learning more.” One way is “you should” like a master tells a slave, and the other is telling a story where you are offering options to consider. One way puts an obligation onto the person who is struggling to cope with the challenges being thrust upon them, and the other is offing to take on the obligation to seek more information, if they want.
But let me be clear. If one of your coworkers says to you that they heard that the Australians are using fried dingo’s kidneys to cure cancer, it’s still your obligation to look more closely at the claim before bringing it to the cancer patient. Come on! Are you trying to help, or just seem like you’re trying to help?
Oh shit. That might have been a little harsh. But, you know what, I’m not going to take it back. Because you get no credit at all for passing along a rumor. You only get credit for genuinely trying to help.
Advice sucks. People come out of the woodwork to tell you what to do, and often times the advice from one person conflicts with another. No matter who you listen to, you let somebody else down. And at the end of each day, you’ve let somebody down. And all you want to do is rest, taste your dinner just once, and to spend the rest of your time free of OBLIGATIONS.
When it comes to advice about cancer… Okay, Karen would probably say it differently, but I’m not her. At the end of the day, I don’t respect you as an expert on the topic, until you’ve proven to be one. The fact that you “heard” something means absolutely fucking nothing. The fact that your aunt’s sister’s cousin went to the James Cancer hospital and is doing great means less than fuck, and it means so very little that quantum physicists don’t have a term for it.
If you truly care, make an offer, and accept the response. And don’t give unsolicited fucking advice. Fuck, fuck, fuck.
“Glad chemo is going well. I read about a place in Batswana that has a miracle cure. I’m glad to research it further if you want me to.”
“I’m so sorry you’re going through this. My brother used marijuana to cure his cancer. I’d be glad to connect you with him if you wanted.”
“I heard that fried dingo kidneys are shown to help, have you heard anything about that?”
Forget all of that, the best advice is no advice:
“I’m so sorry that you are going through this. I want to be there for you. I’m glad to stop by the house to change the litter boxes,” or ” glad to do some shopping on my way home from work,” or “glad to stop by and mow you lawn.” But most people don’t say these things, because these are real things than can help, but create an obligation for the person, not the patient.
When you enter into a conversation with a cancer patient, are you creating an obligation to them or to yourself? One of those is good, and the other bad. I hope you see that. Read some recent posts if you need some more background.
One of your best blogs. Much appreciated.