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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The Mighty Dollar

I hate to be cynical but…

We have laws/legislature that supposedly protects people. While that might be true, there is no doubt in my mind that a big factor (perhaps the biggest factor?) comes down to money. Almost always does.

I was at a big conference in Albany this week where we were talking about some of these issues. The example I used was my dad. I know there are assisted living facilities that don’t have nurses on staff. However, his did. Not allowing his family to provide medication was undoubtedly for money, not for his protection. How do I know? The literal first words out of their mouths at our meeting were: Now that your dad can no longer take his own medication, you need to pay our medical staff to do so. Let’s see, that is $750 more a month.

Bite me.

Yesterday, I finally got a second opinion on my foot. After 5 1/2 months of post-surgery pain, I am now told I need a nerve shot. (Ouch!) Why can’t I get it while I am already here? You guessed it, money.

DAMN THEM. Insurance won’t pay for two appointments on the same day at the same facility. I have to live in pain for another 24 hours then return to the exact same place to get the treatment I need. How is that is any way, shape or form for the benefit of the patient? If they aren’t going to get paid, they aren’t going to do it. Why shouldn’t they get paid? And why should I be in pain for a longer period of time for no good reason? No common sense. I’m right in the office but get sent home untreated.

Ticks me off. Broken systems again. Makes me sound like a broken record.

Anyway, got the shot today. We will see what happens. The opinion is though, that most likely problems will come back and I will need a second surgery. Guess what? That’s what dumb ‘ol me said four months ago. Five months of PT twice a week, all kinds of contraptions and creams that cost money, and consistent pain with no relief. For what? To end up in the same place. At least I could have had the second surgery back in December and already been recovered by now.

Sigh.

Imperfect world. Thanks for listening to the rant.


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Exclusive Rights

When I was guided through learning my personality type in the Eneagram, I discovered one of the worst things that could happen to me emotionally was to be excluded from something. I could give you several stories from my life where that happened. I get crushed when I find out I’ve been left out. Knowing it’s a personality thing helps soften the blow a little, but overall I still get bummed.

Last week I had to go to a funeral on Tim’s (my husband) side. It was a Catholic service, true to family tradition. I asked about whether it was appropriate to take communion and I was told that the priest will announce whether you need to be Catholic or not. If there is nothing said, it is ok, even if you are Protestant. The announcement came so I didn’t partake.

This week I had to go to a funeral on Tim’s (current partner) side. It was a Catholic service as well. I waited and sure enough the announcement came. There was also a lengthy explanation about Polish Catholic vs. Irish Catholic ritual and how to appropriately walk with your hands for the Eucharist depending on your background. I abstained again. Tim wasn’t really listening (lucky) so he went up anyway. His heart was in the right place.

I remember when I was in college at a fundamental Christian college, studying to be a missionary. When I came home on break and went to church with my family, I wasn’t allowed to take communion there either. They said if I was currently attending a Lutheran church, I couldn’t take it, even though I was baptized and confirmed there. Sigh.

I struggle with the whole thing. I feel like it is a good and polite thing to respect traditions. My heart isn’t interested in offending anyone, especially in a place where love is taught. Men don’t sing in the Buffalo Women’s Gateway Chorus. That’s exclusive to women, right?

I have to admit though, it feels a tinge different. For me, church is a place where God (and often Christ) is preached and the basis is love. Love with a capital “L” and in bright shining lights. Why would anyone want to discourage another human from participating in a ritual that brings our souls closer to God?

I remember in my years with more fundamental churches and being afraid sometimes to take communion. It was between God and the person, but the pressure was even worse. There was emphasis on the Bible verses that talk about how “some have gotten sick and even died because they took communion in a manner than was unworthy”. Holy cow (pun intended)! That’s enough pressure to keep the most saintly person from participating. I could get cancer or even fall over dead if I didn’t participate the RIGHT way.

Yikes.

I guess for now, in my 50’s, I feel like I’m on a good track. God is about inclusion and love to me. Come and share in the bounty. For those that believe differently, I will respect their wishes. But next time I think I will choose Tim’s path. If I don’t hear the restriction, I can take the bread and wine in good faith (pun intended) and enjoy the ritual that has meant so much throughout my lifetime. Alas, ignorance really is bliss sometimes.


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Hold ‘Em or Fold ‘Em?

I’ve been having some serious angst about what to do when I grow up. I was here in January of 2018 and now I’m back. I went to see my former spiritual director. She made reference in our conversation to the song by Kenny Rogers, “The Gambler.” It made me chuckle because I had just listened to that CD earlier this week after I don’t know how many years. Love his music.

I know that when it comes to my decision making, I don’t have a problem with stick-to-it-ness. I can hold ’em indefinitely. I will try every avenue no matter how long it takes or how frustrating it gets. My error usually lies in knowing when to fold ’em.

I’ve sought out some wise folks to help but it is still a daunting endeavor. Some say you have to do what you are passionate about. That is the foundation for all else. Others say it is primarily a job, an avenue for making money. Passion is the icing on the cake. I think I’ve decided you need to balance the two.

One of the things I got out of spiritual direction is that my underlying emotions are in conflict. We recently made a pretty large financial decision. While I think it was the “right” couple decision, I discovered I wasn’t as emotionally comfortable as I thought I was. I know it’s hard to believe that a woman who wears her heart on her sleeve so blatantly even has underlying emotions, but it does happen on rare occasions. At any rate, postponing financial wiggle room has made my work search a bit more frantic.

I love variety and I love that I have had so many different experiences in life where I have been able to earn money. At the same time, moments like this I wish I just had that one simple thing. So many of my endeavors require networking and advertising ad nauseum. How do you evaluate if you are using your time and energy wisely? How long do you keep having conversations that seem so promising but turn out to be fruitless before you just stop having them?

Anyhow, that is where I am at these days. I have an appointment with Darren in just a few moments. I’ve blogged about him several times over the years. He is the last “ear” that I have scheduled with and I am hoping we come up with some helpful plans of actions for how to move forward.

So please feel free to share your own stories. And keep those prayers coming. I need to know when to walk away and when to run. Or maybe stay put.


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Yes, I’m Really Gonna Try That Again

Dave has decided he wants to be a personal trainer. We won’t discuss the fact that he thinks he doesn’t need a college education. I just won’t even talk about that part because I GET TOO MAD.

Anyhow, I’ve done nothing but gain weight since a) I have a significant other and b) I had my surgery in October and my foot isn’t even remotely better yet and c) oh yeah, I love sugar.

Recently, I just got told I can walk Taffy three times a week, never two days in a row. I can only go less than a mile and I can’t go in the woods. That is the extent of the exercise my foot gets.

In a moment of insanity, I thought that I could support my son and improve myself at the same time so I asked him to come up with an exercise plan for me. Tim joined the gym a while ago and he is allowed to bring a guest so maybe if I go with him, he will start going too.

I detest the gym. I detest exercise. I really, really, really do. But Dave immediately got into it and planned my routine. We are going to video him doing the exercises because I know I won’t remember how to use the equipment. When I asked him what to blog about today, he told me to blog about this so I guess he’s into it.

Lord help me. I’m not sure when we will start, but I really need to do something. Maybe this plan will be good for all of us in different ways. If you are someone that prays, now is the time to start. I mean pray with all your might because this goes against every molecule in my body.

This is one area where the apple falls far, far from the tree. Look at how ripped this kid is!

I can’t even fathom this is my son!


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Puppy Love

I have no great writing agenda today. I just think this puppy is so dang cute, I wanted to share my pictures of him. My brother introduced us to nine-week-old Willow yesterday. I had spoken to Randy on the phone earlier and his exhaustion and comments about what a pistol his new baby was had me laughing and intrigued.

I mean really, isn’t he priceless?

He did not disappoint. He is this tiny fur-ball with the energy of ten puppies. With three adults giving him full attention, Willow still managed to pee about five times on the rug. He ended up back in his pen a few times for biting with some razor-sharp puppy teeth. Actually, I would call it more like a death grip. He would get my shirt or sock so firmly implanted in his jaws, we couldn’t get him off.

Now how could we leave him in there for long?

After an hour I expected Willow to do the puppy thing and suddenly drop to sleep. It never happened. He would look sleepy, but it was all just a mischievous ploy to fool us into thinking we would get a break. But he’s worth every ounce of energy you put into him. I could tell you how soft and adorable he is, but the pictures speak for themselves.

No writing of depression, grief or medical nonsense this week. Just unadulterated cuteness. Hope you enjoy!


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2011

I’ve heard that sometimes silence is deafening.

I have been working for several weeks now on a project that I proudly finished today. My 14,778 photographs are in a photo program that keeps them organized in a way most people would envy. However, my OCD has not let me rest for years because the way those photos are stored was not consistent.

Now who would even care about something like that? It finally got the best of me and I started the maze of trying to swap this for that. Eventually, I contacted my peep in CA from Adobe who told me a much, much, much easier way to accomplish what I wanted. Unfortunately, I had already completed about a third of the collections but at least the rest of the project went more quickly.

It was interesting to walk down nostalgia road. Back in the days of film, photos were much more difficult to date and record. You know how it was. You had a roll of film for a decade or so and then you finally got it developed. If you were lucky, you could remember what you photographed.

I couldn’t help but do that grief thing with dates. Before and after kinds of things. Oh, before Mom died. Oh, after Tim died. They become non-erasable markers in our heads that leave a scar.

Without even meaning to, I looked at those photos and wondered things like, “Wow. That was Mom’s last Christmas but we didn’t know it then.” And all the years that we were careful with Dad around holidays because we learned from Mom that you never knew when it could be your last.

The part that I wasn’t expecting, was when I would get to a collection and realize that suddenly, the photos would drop off. After about the third or fourth time it happened, I realized the pattern. It was 2011. There just were hardly any photographs at all that year. For anyone, it seemed.

In 2010, Tim got his diagnosis. There was our last Father’s Day together. There was his benefit. But in so many sections, 2011 was just gone.

It was a reminder that my entire family and support system grieved right along with Tim’s wife and children. Where did that year go? What happened to us? We must have been swallowed up in grief. Perhaps nothing felt important enough to want to remember. Yes, there were some pictures, but the difference in amounts of photographs between years was startling.

It makes sense. But it was yet another reminder that grief and loss change us in ways that we aren’t even aware of. The aware parts are tough enough, but sometimes the other insights can take years to see. I’m sure decades too, I just haven’t gotten that far yet.

I guess the take-away is this. If you are in acute grief right now and feel like there will never, ever be a smile in your life again, please know that it won’t stay like that forever. It hurts like hell, but the intensity does not stay the same. Thank God.