Help for Healing

Bitter & Sweet, living daily with grief


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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!


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Introducing….

I have been following the blog Riding Bitch for some time. I recommend you check it out too! (Her blog link is listed on the right below). We have recently decided to do some guest interviewing with each other as we have a lot in common. She posted an interview with me last week. Here is some information about the author.

Niva Dorell Smith is a screenwriter, director and producer. She has directed award-winning short films, music videos, television and documentaries. She has been an educator at the New York Film Academy and is currently a film mentor for the Make a Film Foundation, an organization that assists children with life threatening illnesses in making small “legacy” films. She is currently writing her first book about her experience of loving, caregiving, losing and grieving her late husband who died of brain cancer in 2011.

Q: Under what circumstances did you become a widow? And how did that lead to the book you are writing?
A: My husband died in May 2011 from an aggressive form of brain cancer at the age of 43. We had married only 11 days earlier when he was on hospice. After his death, I experienced the strange sensation of feeling both like a newlywed and a widow. We had both been through such an intense experience in a short amount of time (three years total as a couple, one with cancer), it felt unnatural to cease communicating with him. I was also suffering from post-traumatic stress, survivor and caregiver‚Äôs guilt. I had been writing the whole time we were together ‚Äď in my journal, in emails, in letters I wrote while working abroad for a few months. Once he was gone and I was alone in the silent apartment, the writing intensified. I continued writing in my journal. I wrote him love letters. I wrote down every memory I could remember from our time together. I didn‚Äôt know what I was writing. I just knew that I had to get things out, and from losing my mother 20 years earlier that Time erases memories.
After a while, I started piecing bits together, recreating our story with a literary patchwork of descriptive narrative, letters, emails, text messages, voicemail and video transcripts. The result is a book currently entitled THE HISTORY OF US. It isn’t published yet but it will be in 2013.

Q: Do you think there is an audience for such a book?
A: I think there is an audience for almost any book, but especially one about a real couple going through an extraordinary experience. My book is an emotionally honest and very compelling portrayal of two young people who were thrown into a “tsunami” of challenges before they had even moved in together, and end up making the ultimate commitment. I think many people will relate to it, both young and old, sick and healthy, because ultimately it’s a great (and tragic) love story.

As I mentioned, I think Niva and I have a lot in common. Check out her blog!


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Still Finding Things Out

So I was at Christmas this year with my family as usual. I brought a copy of the book cover to show everyone. Whenever I look at the cover, it renews my enthusiasm. Having that cover to look at makes the project seem real. It’s really happening! There truly is a book!

Everyone responded favorably but I was sitting on the couch later feeling a little let down. A few of my family were near me so I asked them about the cover. I told them I didn’t really know what I was expecting, but I thought they would be a little more excited. Did they have some constructive criticism they were afraid to say? I wanted to hear it if that was the case. They all immediately responded. They all loved it. But seeing the cover reminded them again that Tim is gone. And Christmas won’t ever be the same again. Duh. I work on the book and think about it every day. I look at it like I’m trying to make lemonade from a big ‘ol batch of lemons. And that’s true. But of course, it is still a sad story. I swallowed hard and told them I was relieved they liked it.

Later in the afternoon, we got chatting about some of the events that occurred during Tim’s sickness. Some stories were funny, some made us mad as we remembered people who didn’t behave so well during that time. Then, my niece Sara brought something up and I was puzzled. Everyone else in the room knew exactly what she talking about. I had no idea.

Sara is single and owns a house that used to be a schoolhouse. She is extremely artistic and has decorated her house in a most unique, clever way. Every once in a while she would ask Tim to come help her with some projects. He built her a set of book shelves at one point that went to the ceiling. When he was in Hospice, she brought in one of the shelves and had Tim sign it. I had no idea that happened. Sara said she even had a picture of it. She looked through her phone and sure enough, there was Tim’s hand, signing a board on a hospital bed.

It’s not that it’s a big deal. But it’s been two years he’s been gone already. It still amazes me when I find things out that happened that I was oblivious to. I felt like I was at his side almost every minute. I tried to pay attention to everything. Yet, I missed so much. There have been so many things that other people witnessed and experienced that I hear about later. And the stories obviously aren’t over. So glad Sara thought to do that. And so glad it came up in Christmas chatter.


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Dashes

Did you know there is more than one kind of dash? One is actually longer than the other and there are different rules for each. My editor is a stickler for rules. My point is, is there really anyone reading my personal story who is going to think for even a second “Oh, I think that is the wrong kind of dash!” ?? I’m pretty detail oriented and I never noticed in all these years that some dashes/hyphens were slightly longer than others.

BUT… if you don’t pay attention to the details, the implication is that you are lazy or don’t want the best for your book. So you literally spend hours checking every dash and hyphen to make sure you have the correct one inserted. Hours. And I learned something about myself in this process- I use an awful lot of dashes when I write! By the way, that last one is NOT proper.

And there are just as many rules for zillions of other things- paranthesis, quotation marks, smiley faces, numbers, and on and on and on. So I cooperate but I whine about it.

Then your ten year old comes home from school and says he heard a rumor that his friend’s stepfather died over the weekend. I check it out. Yep, its true. Died at just 34 years old. His friend just spent the night at our house the day before his dad died. Crazy. We went to the funeral home briefly. I know how important it is to have people show up. Dave says “Now I have a lot more in common with my friend, don’t I?”

I’ve got to stop whining about dashes.


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Renewed Enthusiasm

So writing a book is kinda crazy.¬† It’s not the actual story that is so hard, at least not for me.¬† It’s everything else that goes with it.¬† Things you wouldn’t even think of.¬† Getting permissions for writing, song lyrics, photos… seems endless.¬† We’ve actually ARGUED over punctuation and capitalization.¬†

Editing?¬† Over and over and over again.¬† I’m doing the seven millionth edit and I can’t believe I still find typos.¬† Marketing is a whole other beast.¬† And I mean a beast.¬† Designing the cover, changing this, tweaking that.¬†¬† Over and over and over again.

Today, Brigette and I met with some key people at Hospice.¬† My experience with Hospice was awesome when Tim was sick.¬† But going to a not-for-profit organization to ask for assistance with a book that I am hoping to actually make a profit on, was a little scary.¬† I want to be linked with them because it’s a natural fit, but I really didn’t know what to expect.

It was a truly great experience.¬† They could not have been more friendly or helpful.¬† “What else can we do for you?”¬† “What other ways can we help you?”¬† I couldn’t believe it.¬† We walked out of there on cloud nine.¬† We needed a boost with all the mundane jobs we have been tackling, and this did it.¬† How great to have the support of such an amazing organization?¬†¬† Once again, I walked away from that building with hope in my heart.¬† Just pulling into the parking lot can cause me to have stomach issues, but I left with a huge smile on my face.

A sweet day.  Could use those every once in a while, know what I mean?


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Thanksgiving

Almost every single morning I lay in bed and think… today is it.¬† Today is the day I will turn the corner. Today is a fresh start and a chance to do things well.¬† You just have to get up and claim it.¬† And I really believe its true, this idea of positive energy and creating your own life.

I don’t remember when it started to be difficult to get out of bed in the morning.¬† I honestly can’t remember life before Tim was diagnosed.¬† I don’t think I ever sprang out of bed like Tigger, eager to tackle the day.¬† But I also don’t remember laying in bed wishing I didn’t have to get up.¬† Wishing I wasn’t a grown-up with responsibilities.¬† Wishing I could just pull the covers up over my head for another day or two.¬† For sure I know I wasn’t laying in bed, desperate to not be the single mother and widow that I am.

I guess some days it’s self pity.¬† But most days it isn’t really that.¬† It’s not that I feel sorry for myself or think “Why me?”¬† It’s just that I wish circumstances weren’t what they are.¬† I don’t want the responsibility of every decision on my shoulders.¬† Will there ever be day when someone will happily take on my life with me?¬† Will I be able to happily take on their’s in return?

¬†A day to focus on thankfulness.¬† I believe in it with all my heart.¬† I know I have a life full of love and blessings and amazing people.¬† I have a healthy, full of piss and vinegar son.¬† I know my attitude is mine to choose.¬† I know it.¬† I believe it.¬† I’m determined.

And yet, I’ve been upright less than an hour and I am full of tears.¬† And emptiness.¬† And sadness.¬† Shit, not again.


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Writing

It’s another blog day and again my head feels empty of any creative ideas.¬† Just like last week.

So maybe I’ll write about writing.

Part of the inspiration for writing “Bitter and Sweet, A Family’s Journey with Cancer”, is because people said it was helpful for them to understand what it is like to go through such ordeals.¬† There are so many things that happen that you just don’t think about, but it makes sense when you hear them.¬† One example is when I realized that I kept running out of clean clothes and couldn’t figure out why.¬† Then it finally hit me that there was one less adult contributing to the pile every day.¬† So waiting til there was a full load like I’ve done for the last 12 years doesn’t work anymore.

Writing a book is something that I had no idea about.  I just buy a book when I want one.  I imagined that the hard part is writing the book, but had no concept about anything else that is required to get the book on the shelf.

Now, if you wanna sell, you gotta blog.¬† And blog regularly.¬† So sometimes you have to be creative on demand.¬† But even that isn’t the hardest part for me.¬† It’s all the publishing and marketing stuff.¬† Its like a big, big set of dominoes.¬† All the parts are lined up, but you can’t do anything until the first step falls and then everything else floods in.

First, there was incorporating.¬† I had to establish an LLC.¬† Didn’t even know what one was.¬† Then I had to open a business account.¬† Also new.¬† Then I had to sign up with two different publishing companies.¬† I haven’t even started on the second one.¬† The first one?¬† Well, lets just say every single step of the way I get overwhelmed and have these child-like tantrums where I say “Forget it, its just too hard.”¬† Filling out step one of the application on line required two phone calls to the bank, and two phone calls to the accountant, and a few SOS messages to the publishing lawyer.¬† That was step one.¬† From what I can tell, there are about four thousand more steps.

After it is all said and done, it isn’t so bad.¬† But the initial panic kills me.¬†¬† I’m not sure if its just who I am, or it is still part of “grief brain syndrome.”¬† I believe whole heartedly in growth of every kind and I can’t imagine ever not learning anymore.¬† And yet, I have those child-like tantrums regularly where I say I just don’t want to learn any more new information.¬† Disk is full.¬† No more storage space available.¬†

Truth is, in spite of being a Type A personality times 10 for most of my life, I would have quit and given up long ago.¬† The only reason I haven’t is Brigette.¬† She works with me full time on this endeavor.¬† And she is paid on commission so that means… she works full time for free.¬† She has the patience of a saint.¬† She just sits quietly while I freak out several times a day and have the tantrums.¬† Then she does research and unravels it all and we tackle the list one item at a time.¬† Then she babbles on about how amazing this book is and how ridiculously successful its gonna be.

I hope she’s right.¬† More and more, I hope she’s right.¬† Not so much for my sake anymore, but for hers.¬† Writing a book is a gamble, a great big one.¬† You give your heart and soul and time and energy, and you have no idea if it will even sell.¬† So for Brigette’s sake, I hope it does.¬† I hope to make her a millionaire, because she deserves it.