Help for Healing

Bitter & Sweet, living daily with grief


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Progress

One of the things that happens with writing a personal book about terminal illness, is that people tell me their stories. Part of why I work so hard to “heal,” is so that I can be present for other people as they grieve.

There are so many stories to share and they effect me in so many different ways. One family in particular has been giving me quite an education about things I haven’t experienced or heard about before. And they challenge me to figure out how to help them grieve because their situation is so unique.

Their loved one died from a MRSA infection. I have heard of that, but have never known anyone who has personally dealt with it. You can’t imagine all the added horror that is heaped on top of the already tough job of losing a human being. Spending those last precious last days, hours, and finally minutes while you are scrubbed up and covered in all kinds of barriers to prevent infection, sure changes the atmosphere of that time together. I can’t even imagine. I crawled right into bed with Tim the whole time he was sick, in treatment, or in the last stages of the dying process. This family was robbed of that.

They were told after he died that all of his belongings, including medical equipment would need to be destroyed. Incinerated in fact. As an organizer who goes into people’s homes and tries to help them de-clutter, I know how hard of a time people have letting go of “things.” But try to get rid of things that belonged to a person who is deceased, and it is almost impossible. It is a very, very difficult thing to do. One of the things that helps immensely, is when you can adopt a “pay it forward” mindset. Knowing someone else (maybe even someone you know) can use things helps to let them go. I remember being excited when I found out about how the Lyon’s Club can use old eye glasses. I had found so many pairs of Tim’s around the house that I didn’t even know he had. Donating them made me feel great inside and I knew Tim was smiling about it too.

This family? Robbed again. They thought they had to burn everything. How the hell do you find the strength and energy to do that?

We decided to do some research. It appears that the information they were told may have been incorrect. One of the worst things about accepting our mortality is how powerless we are. It is rough on us Westerners to not have control over things. When I decided to jump into research today, I didn’t know how much time it would take. But boy, was I aware at how pumped I was when I actually made progress. I bounced around a whole bunch of places and websites til I finally hit the jackpot with someone in the Erie County Health Department. He was a wealth of information, was friendly and compassionate. I couldn’t send an email fast enough to that family.

Hopefully this information will help them get back some of those things about the grief process that can help us get through it. No, it won’t bring their loved one back. Nothing will do that. Their hearts will still be broken. But maybe now they can start to create some “sweets” from thier “bitter” situation. I call that progress ūüôā


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Flashbacks

So I’ve started writing the second book in the last couple of weeks. The title is “Life After Death, on This Side of Heaven.” I found quickly that I have to limit how many days a week I work on it, and how many pages I do at a time. I’ve forgotten how difficult it is to encounter all those journal entries for the “first” time since I’ve written them a couple of years ago.

I’ve found myself saying to my friends and family a lot lately that its been two and a half years and I think I’m still stuck in the same place. They vigorously shake their heads no and say that I am not anywhere near where I was back then. Now that I’m reading what I wrote back then, I know what they mean. Man, was it hard then. The “bitters” sure overpowered the “sweets” on a daily basis.

I just reworked a section about Frankie. I will give you a sneak peek so you can see what I have been remembering in May of 2013, three years after Tim’s initial diagnosis. This was originally written in January of 2011.
__________________________
A half hour later when we (Frankie and I) were laying in bed, I was almost asleep and thought I heard sniffles. I asked Frankie if he was crying… he answered with a downpour of thoughts and feelings that broke my heart.

“Yes, I’m crying. I miss daddy soooooooo much!

‚ÄúI hate cancer! People should be able to smoke or do whatever they want without having to worry about cancer.”

“If dad had been here tonight, he would have yelled the whole night because we were so loud.”

“If daddy were here right now, he’d be laying right next to me and I would lay on top of him and be his Frankie blanket.”

“I just wish daddy were here right now.”

“There’s so many changes, so many changes.” I asked him “Like what?” and he paused and then said “Everything!”

“It‚Äôs so sad that daddy missed seeing his granddaughter.”

“Daddy was given the wrong medicine. Maybe he would still be here right now.”

My heart broke, but I was also beyond relieved that he was showing emotion and opening up to me about it. I let him know the smoking didn’t directly cause daddy’s cancer. I reminded him that he quit smoking as a present to Frankie for his 5th birthday because he loved him so much. I told him that daddy wasn’t given the wrong medicine, the chemo just didn’t work because the cancer was too strong.

But mostly I just laid next to him and cried with him, telling him how much I missed daddy too.
___________________________________

Kinda took my breath away. We ARE doing ok. And we ARE smiling more these days. But it’s ok to remember too.


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You Just Never Know

So when I thought about writing Bitter and Sweet, Brigitte had me start reading books on writing books. There seemed to be an assumption in them that authors will write more than one book. I would explain to Brigitte that I wasn’t an author by profession and I would only be writing one book. She would just plant a seed with something like “Well, you never know.”

Then I started writing Bitter and Sweet, and I kept fighting myself. I did not WANT to write more than one book, but it was becoming very clear to me that my story was really two totally different topics. Bitter and Sweet became a book about facing a terminal illness, being a caretaker, a patient advocate. That really is different from the grief you deal with afterwards. In spite of my best efforts, I had to admit I had two books in me.

In the meantime, Brigitte keeps planting seeds about the next book after that and I keep reminding her there are only two books. She finally said that she already knows what the third book is- a book about all the stories that come to me because of the book I’ve already written. Damn her! That’s actually a good idea. And she was smart enough to say it to me the day after I heard this story.

The gentleman gave me permission to blog about this provided I took the usual care to change names. He was a contact I met through marketing bookstores. Some stores want to read the book before they will agree to try and sell it and he was one of those people. I called back to follow-up with him and ended up having a lengthy conversation with him.

He had only read about 90 pages of Bitter and Sweet but his first comment was that the title was perfect. He was weepy throughout his tale. Turns out he lost a son in an accident, and then his wife the year before Tim died. It happens almost every time I talk to someone about my book- they have a story to share. Who hasn’t been touched by cancer/death in some way?

He said the book was going to take him a while to finish. Generally, people either say they couldn’t put the book down and finished it very quickly, or they say it touches very close to home and it will take them a while to slowly digest it. He said the book was causing him to think about things that he has pushed down for awhile and that he believes God will use the book to help people heal. Wow. That would make my heart soar.

Then here’s the kicker. He was reading the section of the book where I described how Tim and I bought an adjustable bed. It was a big deal at the time because after he was diagnosed, we weren’t really able to sleep in the same room anymore. Tim had to sleep more upright and had great difficulty. So it was a day for celebration when we got the new bed and could lay side by side again.

The night that this man read that section, he had a dream about his wife. It was a very vivid dream and he felt her laying next to him. When he woke in the morning, he was heartbroken to discover that she was indeed still gone. But he had a beautiful night with her. Double wow.

That one story alone makes all the months of writing the book worthwhile. What a gift to him. What a bigger gift to me. Please let me know your story!


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Mounting Excitement

It’s been quite a week. I’ve written before that I keep trying to be excited but I mostly get terrified. Saturday, the Buffalo News printed an article about the book. I WAS EXCITED!!! The editor said he was having trouble cutting it down because he didn’t have enough space so I was expecting a column. So when I opened it up and there was a full page article and a big picture, I got VERY excited. I usually hate pictures of myself and I actually thought this one was good. Very cool!

Today there is a smaller article in the Bee. It was also great other than getting the name of the book wrong. It was kinda funny too because it was listed right next to the picture of the cover of the book LOL. People will see the name on the picture.

Monday was AM Buffalo, our local 10 AM TV station on ABC. It was only five minutes, but everyone says it was a great piece. It is the most popular footage on the station’s site right now. People say I didn’t look nervous, which really makes me laugh.

But the biggest excitement of all came about a half hour after the show aired on Monday. My dad called my cell phone. Now, you have to know my dad. He is the perfect German stoic. You know he loves you, but it would embarrass the heck out of him to say so. All my life people would tell me how proud he was of me because he couldn’t stop talking about me when they bumped into him. But to give a compliment to you verbally, face to face, would really be tough for him.

So I answered the phone. I truly expected to hear something like “I couldn’t really hear you very well” or something like that, because that’s just his way. I said “Hey Dad, did you see the show?” He said “Yes. That was really, really nice.” He then asked if we could get it on a dvd for him because he “would really like a copy of that.” I hung up and looked at Brigitte. Here come the tears again, this time for joy. I doubt I’ve ever felt prouder in my entire life.


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Crying

So I cry, probably more frequently than other people. I read somewhere that the tears that come from joy or sadness are of a different chemical makeup than other kinds of tears (like from onions, wind, etc.). Tears from emotions supposedly have healing elements to them, so there is truth to “feeling better after a good cry.” I should be feeling pretty good after 46 years of crying ūüôā

Today I lost it in Wendy’s parking lot. Brigitte was with me and we were doing our usual running around to promote the book. Her latest wild (and looks to be successful) idea is that we need to get into colleges. The book could be very helpful in philosophy classes that discuss death and dying, and also in medical classes that talk about patient care. Today was our first meeting at one of the campuses here in Buffalo.

Overall, things have been wildly successful. The article comes out Saturday in the Buffalo News in their new section called “Refresh”. AM Buffalo airs on Monday and I will be on that in the second half of the show. I am awaiting an interview that will be in the West Seneca Bee, hopefully next week. And the big launch is going to be Saturday. The details are coming together and it’s going to be a smashing event.

So why the tears? God only knows. I’m just plain exhausted and overwhelmed. Can’t get everything done. But there is also an emotional element. I know that Tim would be thrilled with this book. I know it can help lots and lots of people. But there is still this awkward feeling that nags at me. I am getting “noticed” and being “successful”, largely because my husband died. I know he didn’t “die in vain” as they say. I know this is doing something positive with this experience. But nevertheless, he is gone. And we all miss him. So no matter what good happens, it is still “wrong” too.

Just hit me while I was typing. It’s the epitome of “bitter and sweet”, is it not? Guess if nothing else, I pick good titles!!


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Truths

I¬†set up a speaking engagement yesterday and the conversation around that booking has me up and deep in thought.¬†The venue is a place where people who are battling cancer (personally or with a loved one) can hang out.¬†Most people have a very high regard for Hospice so I was surprised to be informed that many of this particular crowd are NOT Hospice fans.¬† They feel the message from Hospice is to “Give up and die” and they are fighting hard to beat their disease. We have probably all read miraculous stories of people who have overcome cancer, many by simply refusing to give in to the disease.¬† True?¬† True!

So here is what is formulating in my mind. Picture the ageless analogy of the glass of water –¬†half-empty, half-full.¬† The¬†glass is half-empty. True. The glass if half-full. True.¬†I would say that most people tend to see the glass in one way or the other.¬†¬†Usually people tend to see¬†life in the same way- either pessimistically or optimistically.¬† Do you follow me so far?

Here is the theory¬†I have been working on over the years in my practice.¬†Both¬†“sides” are true.¬†How can one be right and one be wrong?¬†It’s more a¬†matter of perspective. In order to be balanced in life, those who see the glass is half-empty, have to concede the glass is ALSO half-full.¬†If I am¬†Miss Susy Sunshine, I have to recognize that there are also hurts and disappointments in the world or else I¬†will probably¬†ignore the genuine pain of people around me, including my own. If I am Miss Negative Nelly, then I run the risk of being stuck and missing out on the solutions and blessings that are in front of me and others. We are probably all naturally bent to one side or the other, but we¬†can choose to consciously be aware of the other side as well.

Bitter and sweet.  Another face of the glass of water.

But because of this experience with Tim, I feel like there is another chapter to this that tugs at me.¬† Perhaps it is not new necessarily, but it is another¬†way to articulate¬†similar thoughts, adding another layer of sorts. For me, the great spiritual challenge is this-¬†to hold both truths at the same time. It seems impossible and I don’t think in our culture we are encouraged to do so. But I want to keep trying. I want to keep changing my language from “BUT” to “AND”.¬† Instead of saying¬†“The¬†glass is half-full, but it’s also half-empty”, I would rather say “The glass is half-full AND it’s also half-empty”.¬†Perhaps it is too subtle¬†of a difference to¬†matter, but somehow¬†I think it’s actually a monumental difference.

So I hope when¬†I speak to that group next month, I will be able to be sensitive to their¬†position, to their¬†feelings. And maybe I will also be able to at least open them up to the idea that¬†curative care and palliative care are not necessarily in such opposition to each other that¬†there isn’t room for dialogue-¬†that there is¬†room to learn from each other. I’m not sure how successful I was, but¬†I tried to talk about that several times in my book- that Tim and I were constantly trying to juggle fighting for his life with accepting possible prognosis with grace and dignity. We all will die someday.¬† TRUE. AND… We all have much more power and direction¬†than we ever give ourselves credit for. TRUE.

Thanks for bearing with me.¬† This is a very different kind of blog for me. I usually write about my feelings and experiences and it generally flows more easily.¬† The content here is still formulating for me so thanks for your patience… and¬†I welcome your thoughts!


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Be Careful What You Wish For

So it has been an exciting, emotional week. Me? Emotional? I have been recognizing that as the book draws closer to the launching date, I am getting more and more intense. Crying at the drop of a hat. Sometimes the hat doesn’t even drop and I cry anyway. I have theories I guess. The subject matter is intense and grief-ridden. That’s one thing. When you pour your heart and soul into something for 13 months, that’s pretty intense. That’s another thing.

On Monday, Brigette was here working with me and we had a conference call scheduled with our Hospice contact. There was some question as to whether they were going to be able to be involved or not so this was a crucial call. They came through with fulfilling our highest hopes. They are going to handle all the press releases which is a huge burden lifted from our shoulders. The release will go to radio stations, newspapers, and tv stations. She mentioned that we would probably get at least one tv station to cover the launching.

They are also trying to get a tv personality to emcee the event and get us on their tv program the week before the launching. We answered “okay” as if this sort of thing happens to us every day. I was stunned and silent, terrified.

On Tuesday, we received a review of the book from a big, important dude at Sloan Kettering in NYC, the #2 cancer treatment center in the USA. We asked for a two sentence blurb. We got a two page review. And it was GLOWING. And more importantly, his words indicated that he truly got the whole book- he just plain got it. He got what I was hoping readers would get from it. He is a total stranger too. No bias on his part. I sobbed. Like a baby.

Tuesday afternoon I made contact with Roswell (Cancer hospital in our area). Given the other events of the week, their person was like “thanks for letting us be a part of this!”…. She was thanking me and excited about figuring out how they could help. What??

This all set me into a tailspin. Isn’t this what we have been working our butts off for? Then why I am numb? On Wednesday I talked with my daughter Emily. I decided she has a very wise, old soul. She listened to everything, including the review. She calmly said she knew exactly what my problem was. My problem was that my world just got bigger. Much bigger. My problem is that I’ve never experienced this level of success in my life before. She calmly said she now knows the purpose of why her father died. Now she knows that he is taking care of Frankie and I. We are going to have enough to live on and we are going to be able to take care of our house. Anyone that knew Tim, knew he worried about that. That’s why he worked til two weeks before he died.

Emily. She’s brilliant. She put it into words for me. It took some of the terror away. Today I had my spiritual direction session and we discussed it further. She cried too when she heard about the events of the week. We talked about how I don’t know how to wear success. I understand hard work, but I don’t know what to do with having it pay off.

Don’t get me wrong. When I wake up from the dream, I will be grateful. I figured out how to be grateful in the face of disease and death. I just have to figure out how to be grateful in the face of positive happenings. But careful for what you wish for, it just might scare the pants off you!