Help for Healing

Bitter & Sweet, living daily with grief


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FEEDBACK

Now that the book has been launched, one of the best things has been getting people’s responses after reading it. I am posting one today that just had to be shared. It brought on a big grief cry, which I haven’t had in a while. It was cleansing and heart breaking all at the same time. (Is that another bitter-sweet thing)?

“So far, I find I’m unable to really read the book. I’m not sure I will be able to. I can skim it, I can read a passage here or there, but I just can’t go further than that. I can’t say I knew Tim fabulously well, but you and Frankie yes, and that cuts the reading a little close to the bone.

There is ‘more to the story’ that I’m not sure I shared with you when I took Frankie to the Sabres game when Tim was sick. Ready? No you’re not. Since when were you ready for any of this? Pull out your tissue box for a trip down anti-memory lane.

I got tickets to a Sabres game from a guy I work with. A few people were aware that I knew a boy my daughter’s age who was going through the ordeal of watching his dad slip away. When one of those people offered me tickets, I told him who I was going to take. Frankie hopped in the back seat of my car. From that point on, he never stopped talking, except to breathe now and then. Come up for air! He was excited about that game and he wanted to tell me everything. Hockey cards, players, Wii hockey, other players in the league (many of which I had never heard of but was compelled to pretend to know more than I did), what signed pucks he had, etc. I think he was going to start playing hockey himself that fall. I mean, it just went on and on. And it was great.

Our seats were in the 300 level. The game is going on. He’s telling me ‘He shouldn’t have done that. He should have passed it to Smith, and then Jones would have been able to come around and it would have been right there.’ I’m getting this all night. During play. During stoppages. Between periods. Insightful comments too.

I started thinking he must be driving the people around us nuts. He was driving me a little batty after a while, because I suddenly realized it had been like two hours, and the chirping hadn’t subsided even for a second. I kept thinking ‘How long can he keep this up?’ Pretty long it turns out. More commentary, more insight. Earlier in the game, I had been pretty engaging with it. ‘Well, I dunno Frankie, if he passes it to that guy, then he risks the pass being intercepted and…’. By the third period, I was growing less responsive. Tired. He’d make a comment and follow it up with ‘Right? Right? Right?’ You couldn’t just hear it, you had to acknowledge it. What an intense kid. ‘Right, Frankie.’ He wore me out. But it was great. We had such a wonderful time.

I made it a point to keep our conversation stayed on the happy side, and while Frankie was able to get away from what was going on at home for a while, he couldn’t just shelve it. It was his dad for goodness sake. I’m pretty sure that doesn’t leave the mind for very long. At some point, out of the clear, blue sky, he asked me ‘How old are you?’ I read into the question a little, and said ‘I’m 45. I think your dad is just a couple years older than me.’ He didn’t say much to that. The subject passed. It was one little question, but there was so much in it. There’s thinking of my family, of his own circumstances. There’s a question about how normal is it that he could be losing his dad now. And when I answered the question, the wheels were turning inside his head. Grinding. I’m sitting there next to this boy, and wondering what is racing through his head in that moment. My dad is still living. I haven’t gone down the path he is going down. It is so hard to get a feel for it, and so hard to feel anything but pity for this young man, who is much closer to devastation and the finality and permanency of it than he probably realizes. And we’re sitting there watching a hockey game.

I bought him a pennant and we planned on going out back to see if any players would sign autographs for him. After the game, we went out back. After a game is a challenging time to get autographs. I knew some players would stop, but probably not many. It is late, and they want to get home. We ended up getting five players. We specifically waited for Ryan Miller. He is always one of the last guys out so by the time he got out, what crowd there was had largely dissipated.

After one or two players had signed and gone on their way, Frankie said something to me about ‘after my dad dies’, Timmy was going to be taking him to some games (as opposed to Tim I surmised). He phrased it as a ‘when’ rather than an ‘if.’ I figured Frankie knew exactly what was going on intellectually, but emotionally, I couldn’t be sure of where he was in processing everything. I let just a couple of seconds pass, because it was a somewhat shocking statement to me, and I wanted to hear it again in my head to make sure I heard it right. I had. I half-anticipated we might get into a conversation on that subject during the night, but only if Frankie wanted to bring it up. I knew that if the opportunity presented itself, I wanted to let him know I wasn’t going to let him free fall if I could help it. Here was the opportunity to let him know that an adult male of the same generation as his dad, who wasn’t a family member, gave a damn. I think I put an arm on his back and said ‘Frankie, if that time comes, I’ll be around to help you out.’ I felt silly saying ‘if.’ It wasn’t that I wanted to be Mr. Hopeful in the face of what was at that point a pretty fair certainty, it was that I did not want to be Mr. Gloom, just in case he was holding onto something inside, even though I didn’t think he was. His statement was definitive. The way it came across made me feel like he was trying to get used to the idea, and somehow in his mind, his dad was already a dead man. I don’t mean to make it sound like Frankie was writing off his dad, but he may have been writing off the idea that there was a future for him that involved his dad. Testing it. How did the words feel when spoken? In some respects, it was kind of admirable to hear. He gets it. He’s (being forced to be) brave. He acknowledges it to the extent he’s able at this age. But it was so sad. What can you say to that? I certainly couldn’t give him the big reassuring ‘Ahhh, it’ll be ok. Don’t you worry about a thing’ statement. He knew. I knew. He would have called bullshit on me in a split second and rightly so. It wasn’t a thing to play around with. And his statement was subtle, like the age question. It wasn’t just idle chit-chat about who would take him to hockey games. He was making the deeper statement. My response had to acknowledge it. It was a wet eye moment for me which I concealed from Frankie.

And there we stood by the gate at the player parking lot. Ryan Miller got in his car, drove toward the gate, and everybody there was kind of holding their breath – will he stop?….YES! I sent Frankie in front of me with the pennant, and Ryan Miller signed for him. I sent Frankie to another car, because a second player had stopped. While Ryan was signing the ticket stub and Frankie was out of earshot, I couldn’t help myself. I don’t know exactly what I said, but it was something like this. ‘That blond boy you just signed for… he’s going to lose his dad in a couple of months from cancer and you just made his night.’ Ryan Miller said two words, which I think put the whole thing into proper perspective. ‘That sucks.’ Truer words were never spoken.

We headed for the car. And still, Frankie is talking to me, and our conversation continues. Our four hour conversation continues. About anything, mostly hockey. It was great. He was on top of the world. It was a big world, and he was sitting atop of it. It felt great to give him a bright spot during a long, horrible period of time. Chirp, chirp, chirp all the way back home. He was so happy. An inexhaustible supply of topics, questions, and observations. There is nothing wrong with that kids’ brain, I can tell you that much. That is one high-functioning instrument right there. Neurons are constantly firing. Sharp kid. You couldn’t put anything past him. And he never gets tired. Ever.

So, we got home. I had the pennant and the ticket stub with me in the front seat, and when I stopped the car, I gave them to Frankie, telling him to get in there and show off his prize. He was so full of life. He was just busting. He dashed out of my car, and I followed, making sure I was far enough behind that he’d get a little moment in the sun all by himself. Unfortunately, that bright spot was about to come a grinding halt, and I didn’t realize how quickly that was going to happen.

I got into the house. The kitchen was dark, and so was the office. I snaked my way through and into the family room where everybody was. You had just finished watching a movie. Frankie was already in Timmy’s arms, snuggled on a couch, seeking comfort from a brother who was walking the same terrible walk as he. Tim was moving between chairs constantly, trying different, odd positions to sort-of sit. He couldn’t get comfortable. His breathing was audible and labored. His stomach was distended. He looked terrible. Terrible. Grey. The grey pallor of death was here, unmistakable to me. I expected to see Tim and you seated, with Frankie showing off his prizes. Instead, the prizes were nowhere to be seen. Discarded. Frankie was completely deflated. I mean like ppfpfpfffffffffft deflated. It was all gone. Everything of the prior five hours was gone. He walked right back into it, prizes in hand, joyful in the seconds before I got into the room. He went from a dark room to a lit room, saw his dad looking grey and terrible and in extreme discomfort, and boy, the imagery of going from darkness to light never had more meaning. Boom. Nothing had changed. The lights were on but the room was dark. The specter of death was in the room. I could feel it. Frankie had spent the past several months watching his father slowly die and boom, he’s right back in it. Oh yeah. Dad’s still dying, and this still sucks. This is still overwhelming, I’m still powerless, I’m still being swallowed alive, this is still a living nightmare that finds a way to get worse every day, and I’m still seven. I remember you expressing concern at times because Frankie didn’t really want to talk about it much. I get that. I got it right then. How does a kid talk about watching his dad perish a little bit more each day? He can’t. He just can’t.

The moment I entered that room is what I always flash to when I think about that whole period of time, and the reason why I just can’t read your book cover to cover.

Tim thanked me profusely for taking Frankie to the game. We spoke, but he was in such difficulty, it was a brief conversation. We shook hands while he was in a funky kind of semi-kneeling, semi-prone position on a chair near the hallway. He wanted to thank me – father to father. But where I felt comfortable with Frankie, I felt very much the opposite with Tim. He knew. I knew. What could we say to one another? Two fathers who understood one another and the circumstance, and all we needed was a glance at each other as we shook hands to pass an awful lot of unspoken fatherness and sentiment between us. There’s a connectivity between father and son that is generational, and cuts to the core of a man, and cannot be expressed verbally. In the brief eye contact and handshake, I got his expressions of gratitude on every level, and he got my acknowledgement, and we shared a total understanding of the entirety of the circumstances, and we did it all in a few seconds. We thoroughly understood one another. I cannot describe it. It is a man, husband, father thing. He knew it. I knew it. That’s all. Nothing needed to be said. Other conversations took up the slack, about the movie, a little about the game, but Frankie was disinterested in talking at that point.

I left that night, knowing Tim did not have an enormous amount of time left. I was glad to have had the opportunity to give Frankie a bright moment in the middle of one giant terrible, enduring moment, and I was sorry it couldn’t be more than it was, and that it ended so abruptly. How many millions of times has a child raced across a room seeking the comforting embrace of their mother, only to find themselves in the arms of someone equally devastated? What a terrible thing for a child to go through.” Written by D.B.

David, thank you for sharing this. My heart broke as I read about my son’s pain. I wonder what still goes on in his life that I am not even aware of as he has grown up in ways a kid should never have to. And thank you for being willing to talk about how the journey has affected YOU. You promised me at Tim’s funeral that you would try to step in. You promised me that when others faded from our lives, you would not.

You have kept that promise. I am so deeply grateful that you were the one that took Frankie out that night. Not everyone would have captured the significance in the way you did. Many would have blocked it out if they did. I am lucky. Frankie is lucky…


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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!!


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GUEST BLOG PART 2

Hopefully you caught Part 1 of the “interview” with RidingBitch blog writer Niva Dorell Smith. She has answered the same questions that I did on a previous blog. They hold profound thoughts so enjoy.

Q: Had you had any previous experience with caregiving before your husband Kaz was diagnosed with a Stage IV Glioblastoma in 2010?
A. Yes and no. My mother had been in and out of hospitals for much of my childhood. In fact, her health is why my family moved to the United States from Israel when I was five years old. She had several open heart surgeries and other major procedures from that time until her death 17 years later. I was never her caregiver because I was too young, but I had grown up with a familiarity with hospitals, doctors, nurses, and the fear of possibly losing a loved one. When Kaz first started having symptoms, then was diagnosed, I think he was surprised by how calm and steady I was. Before then, he had always been the calm, steady one between us. Of course, inside I was a ball of emotions, but on the outside I was calm.
Once things progressed with him it was a different story. I was still relatively calm but the stress of the situation sometimes got to me. I found it very challenging to be so powerless, to watch him suffer and not be able to do much about it, to have opinions on how to deal with things and not be able to make them happen. The patient is in charge of his own body, as it should be. I used to think of my father a lot, and my older siblings. They were the ones who took care of my mother all those years.

Q: Are there any specific things that you would advise caregivers?
A. Well, like you I would suggest having a notebook and writing everything down. The caregiver must be quite organized because there’s a ton of information to keep track of and the patient usually can’t think straight. I found myself relating to this aspect of caregiving a bit like film production. My skills as a director, production manager, and assistant editor – all jobs which require a lot of organization, communication and the ability to function efficiently under pressure – came in handy when I became a caregiver. I was an efficient caregiver and a strong advocate, but emotionally I was sometimes a nervous wreck.
I would also recommend support groups. Kaz and I had different opinions about this. We went to a brain tumor support group twice, once in the beginning, once in the end. The first time he rode his motorcycle and strode in with his helmet and was pretty uncomfortable with the whole thing. The second time was several months after his motorcycle accident and about 7 weeks before he died. He was on a cane and had been depressed. His mindset was completely different and he enjoyed the group much more. I always wished we had kept going to that group because we would have learned a lot and been able to connect with other brain tumor patients and caregivers. I ended up going to a caregiver’s support group, which was also very helpful. It was the only place where I could vent honestly about my feelings and be heard and understood without judgment. I also learned a great deal from the other caregivers, some of whom had been doing it for over 10 years.
Having down time is also important. Being a caregiver can be extremely stressful and challenging to get any time away from the situation. I took up swimming for a while, which was great. But you can do lots of things – yoga, walking, meditation, retail therapy. Whatever gets your mind off things or allows you to relax, if only for a few minutes a week. Your brain and body will thank you.
Lastly, I would urge caregivers to not be shy about asking for help. People often feel helpless when a friend or family member is sick. They want to know how they can help. So, if you need help, ask for it. Except for the last 6 weeks, I worked full-time the entire year Kaz was ill. I could never have managed without the help of our friends and family. We were also very lucky that our respective bosses were very supportive. This made all the difference in the world.

Q: What was your experience of caregiving for your husband like?
A. Stressful. Beautiful. Scary. Frustrating. Profoundly emotional. I once told Kaz that I felt honored to be with him during this very important period of his life, to take care of him and be his partner, even though it was challenging. The stress could have torn our young relationship apart, and almost did, to be honest. But it also brought us closer together. Dealing with someone’s health is an intimate experience and scary too, because it makes you face your own mortality. We loved each other enough to stick with it and look down the barrel of the beast together. It was odd to fall more in love while knowing we would soon be separated forever. Odd, painful and beautiful, all at once.

THANKS NIVA. I was moved reading your responses and felt like yelling out AMEN SISTER!! Stay tuned everyone. There is more to come!