Help for Healing

Bitter & Sweet, living daily with grief


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Guest Blogger: My Son, Frankie

We are getting ready for school and I tell Frankie it’s Thursday. Blog day. As usual, I’m stuck for an idea. Somehow it morphed into him writing it. Perfect! When he was five, he wrote a beautiful and poignant story called, “The Kite and the Snowflake,” that won third place in the Reading Rainbow contest, which was a huge deal. (Sorry, brief bragging moment.) Anyhow, here it is, an interview/blog from 12-year-old Frankie.

What will you write about? “Nothing is more important than football.”

Why would you say that? “It’s true.”

Can you be more specific? “Cause it’s fun to watch guys tackle each other.”

Seriously, what makes it interesting? “There are a lot of different positions. Then there a lot of different players that fill each position. It’s not a run-on game. The clock stops and starts. Passing, running. Contracts are interesting- how much the players get paid.”

Anyone that knows you, would have expected you to say that nothing is more important than hockey. Why the switch? “I don’t know. The Sabres suck! Hockey gets boring. For football, every team has a phenom player.”

What the heck is that? “A phenomenal player.”

Who are some of your favorite phenoms this year? “I don’t even know how I got into writing this blog! Are you going to write down everything I say?”

At this point, Frankie grabbed the computer himself and typed, “Sammy Watkins, Mario Williams, Jerry Jughes, Kyle Williams, Marcel Dareus, Leodis Mckelvin, Dan Carpenter, Peyton Manning, Aaron Rodgers.” The bus came at this point and he handed me back the computer saying, “I can’t possibly write them all down.”

This blog doesn’t do him justice. He can hold a conversation with any adult about any sport- hockey, football, basketball, baseball. Men (usually it’s men!) are amazed and have often told me he knows more about sports than most adults they know. One guy actually hired Frankie to help him with a fantasy draft last year. He knows the history, every team in the league, every player, their stats… It’s crazy. He wants to be a general manager someday so he has written HUNDREDS of drafts for teams. Hundreds. Knows every NFL and NHL player’s salary.

Anyhow, this is one of the best mornings I have had in a long, long time. Frankie has been shutting me out for a couple of years now. Getting him to interact with me is a heart-wrenching and usually futile endeavor. This little interchange between us is monumental. It was a connection. I will take it. Thanks for sharing it with me :).


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Guest Blogging

So leave it to Brigette. With her expert researching, she found an excellent contact in California. She is a medical expert, involved heavily in writing, blogging, and connected everywhere regarding issues related to end of life. Frankly, she appears to be quite brilliant :).

Anyhow, I will be on her blog next week and we are looking for many more opportunities to work with her and her numerous programs. She suggested I post the same blog here. I know it is information you already have read several times, but I will include it anyway. I was terribly honored when she had this to say about my entry submission: “This is probably one of the most moving accounts I have ever read. Thank you so much for sharing your amazing story. Your husband is proud of you.” Her comments made me cry.

Stay tuned as Brigette will be posting the links to Dr. Monica Williams-Murphy’s sites and connections. (Her blog is called “ok to die” which is a great title!) Here is my entry:

The name of my book is “Bitter and Sweet, A Family’s Journey with Cancer.” Here is a brief summary. In April of 2010, my husband Tim began to have some strange sensations in his side. On May 7, we found ourselves facing stage IV gallbladder cancer rather than a simple gallbladder removal as planned. Five months and one week later, my husband died. Those five months were the most difficult and horrifying time of our lives. It was also an extremely beautiful time for us. We found ourselves using the phrase “bitter and sweet” so often during those five months, that it was an obvious title choice.

Our lives had been full of paradoxes. How do you fight for your life and yet accept mortality at the same time? How do you maintain optimism, which is necessary for health, and prepare for your death and get your affairs in order? How do you understand God’s love and compassion, and yet experience cancer and suffering?

It’s a sad story, but I promise you, our story is also filled with humor, tender moments and hope, alongside the ravages of a cruel disease. When life hands you lemons, you can pucker up and make a sour face, or you can make lemonade. I think we did both.

Tim and I had a tough marriage. We spent the entirety of our ten years together in counseling. We made progress, but happiness was always a struggle. After diagnosis, we actually worried that kind of stress could be the end of us. Tim was a “glass half empty” guy and I thought for sure he would be angry and buckle under his prognosis. Boy, was I wrong. What I witnessed instead, was the total transformation of a man, a woman, a marriage, a family, a community. While things were obviously horrific battling a vicious disease, we also experienced the most amazing bond and love that we had spent our lives hoping for.

For the first time, we read together, appreciated each other fully, and reprioritized what was important. We started walking our dog together. When Tim got too weak, we took the wheelchair. When I got pneumonia, I would push him halfway and then we would switch positions and he would push me back. I will never, ever forget those moments.

Even the most simple things had greater meaning. Tim would talk about enjoying a hot shower and feeling the sensations of the warm water on his body. He would walk around our yard and come in with tears in his eyes and talk about the beauty he was able to take in. For the first time, he went into work late on our son’s first day of school because he just didn’t want to miss it. New priorities, new appreciation.

When you stare mortality in the face, it is amazing how quickly things can change. The things that you spend your life worrying and fighting about are suddenly rendered ridiculously less important. The housework isn’t so important. Money isn’t the biggest stressor. And I had the joy of watching Tim rekindle and reconcile family and friendships that had been forgotten or stuffed away in a corner. Sometimes that meant confronting painful things. Tim was a peacemaker and avoided conflict. But I saw him stand up for me in ways that I had not seen in the decade we had been together. Why? Partly because he saw me grab a hold of fighting for his life, his comfort and well-being in a way that he had not seen either, but that he was clearly worthy of.

Why do I continue to respect and admire my husband three years after his death? Because in spite of his fear, he faced his ending and he did it remarkably well. He chose his cemetery plot and designed his headstone. He wrote birthday cards for his eight year old son until he turns 18. He wrote wedding cards to this three unmarried sons so he could share his love for them on their big days. Amazing.

So many others were changed as well. We learned to be receivers, to let people help us and the results were astounding. People brought 90% of our meals, cleaned our house, ran errands, entertained our son, put up a fence, helped with yardwork, and even did our shopping. The benefit was that we were able to concentrate on Tim’s appointments and sneak in those walks or spend time with our kids. The benefit to everyone else? The church learned how to rally around their people. The community rose to the occasion. Here is what people said: “Please don’t rob us. We WANT to help. We can’t do anything to stop what is happening to you. What we CAN do, is provide a meal.” It was actually truly and genuinely important to other people, to feel like they were contributing to our lives. That is powerful.

I want to share the last paragraph of Bitter and Sweet. It is actually what I wrote for the bulletin at Tim’s funeral.

“While cancer is a cruel and clever disease that wreaks havoc in your life, my husband and I were able to find and experience so many gifts, treasures and healings in our lives. Since his diagnosis, we have truly been transformed, as individuals and as loving, lifelong partners. Our spiritual lives blossomed and grew in ways I would not have thought possible. And so much of that happened because of the loving, compassionate, strong hands, arms, and feet of the people of God. No one would deny that we are truly the luckiest people on earth, even with the loss we suffer. Few others could boast the kind of dedication and support we have felt poured out upon us. ”

I will never tell you that the cancer path isn’t hard, difficult, gut wrenching. But I will always say, there is a gift in every challenge. Your life can be profoundly blessed and changed in spite of your difficulties. Facing mortality can have a positive, profound impact on your life, if you choose to let it.


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NEW GUEST!

I haven’t had a guest on here for awhile. I want you to meet my new friend, Melissa.

My name is Melissa Eichele, and although I am known for many “hats” I wear, the one I wear the proudest is “mommy”.
 
I grew up an average kid on Long Island, raised by my grandmother, attending private school my entire life. I was a good student, captain of the swim team, and student council president. I went to College with a scholarship, and graduated with a degree in nursing. After college, I married Andrew, who I met in high school. We bought the house I grew up in, fixed it up, and started our life together. I went to graduate school, got my masters degree in nursing, and Andrew worked as an electrician. We tried for 4 years to conceive and were finally blessed with our baby boy Tanner in November of 2007. In July of 2009, we found out we would be expecting a second baby the following April. In our eyes, our family was complete. We truly thought “life couldn’t be more perfect”.
 
Our world came crashing down in September of 2009 when Tanner was diagnosed with cancer. Until then, we thought of pediatric cancer as something we saw on TV, something that happens to “other people”. We learned first hand how pediatric cancer can change your life from “perfect” to a complete nightmare in the blink of an eye. I took leave from my job as an ICU nurse for the next year and a half to sit by Tanner’s side through every treatment and surgery. Andrew took long leaves of absence. When it comes to your child, nothing is more important – especially when you’re fighting for his life. The world kept turning though, and the bills kept coming. We depended on family and friends, fundraisers, and charities for support. The Lexiebean Foundation was one of our biggest supporters, and at the time of Tanner’s relapse, we were surprised with a gift from them, while we were in the ICU, that helped pay our mortgage that month. You can’t imagine how scary it is to sit by your child’s side, praying that he will live, and at the same time worrying about how to keep a roof over your heads so you will have somewhere to go “home” to. With a gift like that, all of a sudden, you can focus fully on your child – the burden of bills was just lifted.
 
I have fought the hardest fight of my life, and lost. Trying to keep my son Tanner alive, I would have given anything, including my own last breath. He was the light of my life, and I know in my heart I will never be the same. But Tanner still lives in my heart, and I hope to make a difference in the lives of families affected by pediatric cancer, in his name. In this spirit I have joined the Lexiebean Foundation so that I can help other families, so that their financial burdens can be lifted, so that they have someone to talk to who “gets what their going through” just as the Falabella’s did for us, and so that everyone will always know my angel Tanner. 
 
 
That is the link to her latest blog where she shows pictures of Tanner’s three birthays. It is worth your time and effort. Happy Reading!
 


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Interview Questions Part 2

I’m up at 4 AM and I’m cleaning out my blog page and found this post I never published. It was back from October so here it is:

For those of you that follow the RidingBitch blog, I apologize for the repetition. These are questions I answered on her blog about the process of writing a book. Hope you enjoy!

What has been the most challenging aspect of writing your book?
It feels sometimes like “grief brain” is permanent. So accomplishing anything can be hard on some days, much less a huge project like writing a book. Two things were hard. One thing, were the days when a wave of grief hit. I could talk/write/process for days and even weeks like I was just telling someone else’s story. Then for no reason that I could identify, it would be a crying, grieving day and the subject matter was larger than life. The second part was learning new things. I would have given up at least a trillion times if my dear friend Brigitte wasn’t working with me full time. She does all the research and information finding. She has the patience of a saint coupled with a brilliant mind!

How did you secure publishing?
We have actually “self-published”. First, we had to form a publishing company, which meant forming an LLC. It is called Baby Coop Publishing, LLC. Once you do the research, it’s tedious but not difficult. You fill out forms and then do legal notices in the paper. Total cost is about $350. After that, we did our research (ok, Brigitte did) and came up with what we thought were the best options. Lightning Source is the company that distributes our softcover book. All of the files were downloaded to them. They have certain companies they distribute to, but it’s most of the biggest in the industry. When they get orders, they print and ship. It’s called “print on demand.”
For the ebook versions, we went with a company called Book Baby. We are still in the process of downloading and revising with them. I thought this would be easier, but it has different challenges. Every reader (Nook, Kindle, Kobo, etc.) looks different. So it’s very hard to design something that looks good in every version. We are hoping to have that released within another two weeks.

What do you hope readers will get out of reading your book?
My dream was that my book will be useful and helpful to people in the same way that other books helped us. You have listed a bunch of books and what you have gotten out of them- I’d like to be on that list some day  For a person struggling with cancer, they can find inspiration in the way Tim dealt with his illness. For a person handling the tasks of being a caretaker, it is full of helpful ideas of how to be a patient advocate. For loved ones and family, it is full of practical ways of how you can truly be a support to the people you care about.

What do you hope to achieve with your book?
The previous question answers the more spiritual goals of the book. On a practical level, I would love to pay off the mortgage of the house before my social security runs out! But the reality of how much money you make on a book is very small indeed. When you realize how many books you have to sell to really make a living, it’s almost impossible.
A much for practical goal for me, is that I am hoping that the book will help generate more referrals to my counseling practice. That is my main profession and passion and I will be doing that for many more years than I will be writing books.


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Processing…

Sunday I had a speaking engagement with a very unique group of individuals, then shared a potluck supper with them. The energy was great and the dialogue was flowing.

Monday we went to a spirituality and health type conference. It was our first experience with a conference and we had no idea if it was a good investment of our money and time. I left the house at 7:15 AM and returned home at 5 PM. Again, it turned out to be great. We sold books but also made a boatload of contacts that I think were perfect for us.

Monday night I had clients. Good sessions. I walked in the house and Frankie was already upstairs for the night. I went up and said goodnight and begged him for a hug, which he reluctantly gave me. Then I walked downstairs and collapsed in bed, but I was in tears. And I had no idea why.

Tuesday morning I went to a session with my spiritual director. Just what I needed. I told her the events of the last couple of weeks since I’d seen her. I felt a little out of sorts, but mostly I thought I was just plain exhausted. The cool thing was, that she had attended my talk Sunday night so she had a first-hand view of what I do these days.

It’s always fascinating when I go see her. She was extremely supportive and complimentary about the skills she saw on Sunday. When we started our “work” together, she said the first image that came to mind was that of a big coal stove. She said I’m shoveling coal in it like crazy. I’m working hard and doing a good job. However, the same work could be done by solar energy. Light. Light itself is full or imagery that is endless. As we continued to talk, she said that I need to be vigilant about remembering that my source is The Light, A.K.A. God. I will still be tired at the end of the day, but I need to remember not to rely on my own strength. My work is utimately about being vulnerable. It is good and I am reaching people, but it truly is exhausting. Stay connected to the Solar Energy. She is so very, very wise.

Later that day I got an email from a dear friend of mine and Tim’s. He wanted to know how things were going, but also wanted to tell me how the book launch had impacted him. He was having his own minor symptoms that he had been ignoring. He decided to go to the doc and is now making some necessary changes in his life to take care of some medical issues he is facing. He wanted me to know that he got off his butt and was inspired to take steps after seeing my presentation. I thanked him for letting me know. This was a new type of story and I love hearing about the endless ways that our story is putting positive energy out there for others.

So… moral of the story? It’s good to be tired from a job well done. Stay connected to God and watch the fruits of your labor. It’s worth it!


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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 🙂

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!!