Help for Healing

Bitter & Sweet, living daily with grief


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Dying in America

I have been reading this mammoth 506 page document referenced at the end of the blog. I admit some of it I read and get the general gist but I couldn’t parrot back the details.

Other times, I feel like I am reading the biography of my father. All of the death experiences I have had with loved ones as well as my own dealings with the medical system certainly resonate too.

It’s strange because I’ve built my business, lectures, etc. around my hard-learned life experiences. I’ve probably said a thousand times that our medical system is broken and I would have no idea how to fix it. Now, reading this work that was published in 2015, it is all there in black and white. I understand slightly better WHY it is broken. I understand a teensy bit HOW it might be fixed.

But mostly, even though it is incredibly validating to read that I actually do know what I am talking about, it is beyond maddening that this stuff is real. It is so lacking in common sense, it is incomprehensible things are allowed to exist the way they are.

Reading on the Kindle platform, I am able to highlight things as I go. I am also able to add “notes” that store in the relevant sections of information. I am like a broken record in my notes when I start with, “This is the like the time with Dad when…”.

There is a plethora of research to back up the usefulness and credibility of end-of-life care. Yet the statistics keep bearing out that most folks don’t die the way they wished. And those that get palliative care only get it briefly at the very end of their lives. Getting it months sooner would be ridiculously more beneficial to the patient and their families. And the big whammy? That actually costs much LESS money.

I have had so many clients and close friends lose people dear to them. Even though they know what I do, most people think they understand what is happening and what their rights are. I hear the horror stories afterward and I want to scream out loud. It didn’t have to be that way!

Yet this will continue, probably throughout the rest of my life on earth. My business won’t make it and my heart will keep breaking because folks (medical and lay) don’t understand death, and don’t understand there are other ways to let things happen than the way they normally fall out. In part, because we still just don’t want to talk about it or deal with it. And we definitely don’t want to feel like we have failed our loved ones in any way.

Even recently when I was at the statewide palliative conference, as I told my story those folks were saying things like, “How did you even know to call the Department of Health?” It makes me sick to think of how many people, every single day, are bullied into choices not in their best interest. And worse yet, they don’t even know they were bullied.

I just took a deep, deep breath as I was writing this. I guess I am equally as crazy, because even though I know all of this, I am going to keep going. I will keep trying and fighting and learning and reading. I’m not even sure why, I just know my passion for this doesn’t seem to be dying.

Pun intended.

Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. https://doi.org/10.17226/18748.


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Collateral Beauty

I didn’t blog last week because I just didn’t feel inspired. Now I am snowed in and I just don’t have the energy… Excuses, excuses. Anyhow, I am going to cheat. I can because it is my blog so who is going to tell me I can’t? LOL!

I went to see “Collateral Beauty” this week with my friend Summer. I heard it got smashed down in the reviews. I can’t imagine why. I think it is one of the most brilliant, poignant, and profound movies about grief/loss and death/dying that I have ever seen. If you have the depth to see it, the lives and plots intertwine cleverly and many types of loss are addressed. Ok, not one of the most, THE most.

Will Smith gives you some visuals of grief that you will never forget. There are some lines in there that entire books could be written about. Summer cried several times throughout the movie. Me? I couldn’t cry. I was beyond tears. I was moved and riveted with my stomach squarely stuck in my mouth.

A perfect example of bittersweet. It was gut wrenching but I wouldn’t have missed it for the world. If every person could watch it and grasp its meaning, I would never write another book or blog, produce a webinar, give a lecture. It just wouldn’t be necessary.

Personally, I couldn’t have watched it at a better time. Or a worse time. My dreams have been tormenting me by night, even though my conscious days have been fine. The movie was smack in the middle of the torture and I’m sure has inspired the last set of horrendous dreams.

Nevertheless, this blog is a blatant commercial. I can’t say much else about the movie because I would not want to give any of it away. Take your tissues and go. If you have experienced a significant loss firsthand, I would bet money that you will resonate with it very deeply.

Bravo. Sometimes the critics are spot on, and sometimes they have no idea what they are talking about.


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Genetic Markers

Last Saturday I was part of a medical conference that was wildly successful. The focus was to start the conversation with doctors, nurses, medical staff, and social workers about starting the conversation with patients/clients regarding end of life planning. The resounding message by speaker after speaker is that our current model is sorely lacking and in particular NY is behind the rest of the country. Right now, the conversation doesn’t occur until you are already in a major crisis or actively dying. This is much, much too late.

Truthfully, the conversation belongs anywhere that people gather. It should start in the home. But the first step is to get medical professionals to be comfortable with the concept. And it is my very strong opinion that the main reason this isn’t already happening is that they aren’t comfortable with dying themselves. How can they help someone else navigate those waters? If docs get it though, they will start to get their patients to talk about it at home. Eventually.

Anyhow, I was part of a six person panel that spoke for about 10 minutes (each) and then fielded questions from the 180-person audience. The conference ended with five skits that showed most of the concepts we were trying to teach. Sometimes the docs in the skits did great, other times they missed the mark. The intent was to generate conversation with the audience and it seemed to do a great job. I was in the skits, but more importantly for me, I wrote them. This was a huge stretch for me professionally. My books and blogs are always about personal things that actually happened. I have never written before by creating scenarios/characters so I was terrified of the outcome. However, it seemed to be go over extremely well. Yay!

On one of the breaks, someone from Roswell (the cancer hospital here in Buffalo) approached me. Bottom line is that apparently they have recently discovered a genetic marker for gallbladder cancer. I was extremely busy preparing for the next section of the conference, but I tried to process the implications of what she was saying. I told her that was incredibly important because the hallmark of gallbladder cancer is there are no symptoms until stage IV when it is already too late to hope to treat it effectively. Of course she knew this. She said she hesitated to approach me, but knew from my lecture that I had kids. Could mean life or death for them.

Could mean life or death for them. That is really the bottom line. I have thought of this repeatedly since the weekend. I didn’t have anything to write the information down at the time, but she told me to google it. I attempted to, but the only articles I could find said there are no genetic markers. I have started looking for the proverbial needle in the haystack in my efforts to find this woman at Roswell. So far no luck but this is worth being my relentless self to find her.

So many, many questions. What if one of Tim’s kids have the marker? What would they do? Remove the gallbladder? Or just run tests every year? Does it ever skip a generation? If the kids don’t have it, should their kids be tested anyway? And would this be important information for Tim’s brothers too? Is there a particular age to utilize this information? I get a physical reaction whenever I start thinking about it. It’s a cross between literal illness from being reminded of the nightmare Tim went through and the utter terror of my kids or grandkids going through it someday, and excitement and anticipation at the possibility of being able to stop it. Thank God I wrote those books and started to lecture or I wouldn’t even know about this information. I think when they have a breakthrough, they should be required to seek out all former patients’ families and make them aware. That’s a pipe dream.

Wish me luck on this latest endeavor. I need to find this person and I need lots more information. And then I need to approach my kids. I talked to Colin and Frankie the minute I got home from the conference. Colin (age 32) just looked at me like I was insane. Frankie (age 14) told me he will never get cancer because he is immortal and will live forever. Later I thought of course this would be frightening for them to even think about, no matter how much they try to be cool on their exteriors.

Yes, wish me luck and say some prayers too!