Help for Healing

Bitter & Sweet, living daily with grief


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Being Mortal

One of the big books on death/dying is “Being Mortal” by Atul Gawande. Recently, Hospice sponsored a viewing of a PBS show Frontline that interviewed this doctor and several other “specialists.” It was produced only a few years ago. (It is available online for viewing at pbs.com if you are interested. I will have a link at the end of the blog.)

I don’t usually get emotional much at these events because I am so consistently immersed in the topic, but this one got to me. There was a video of a man who they were discussing Bilirubin levels with. He was strikingly yellow from jaundice. It all came back to me with a rush. All the same lingo, walking in and seeing Tim’s face and body in strikingly yellow color. That was it, I was done for.

This is not meant to be criticism, just observation and it was fascinating to me. Here was this documentary with doctors, some actually oncology doctors. One was considered a “palliative care expert.” Their ability to handle medical information and dying patients was a bit abysmal. Most of them deal with it day after day, and yet that had no grasp on how to handle the dying with dignity. In fact, usually the patients were much more comfortable than the medical teams working with them.

The author and narrator said it himself. Three doctors in his own family. When terminal illness struck, not one of them knew what to do. Wow.

One of the things I walked away with though, is what I’ve heard over and over again. Doctors feel like anything less than cure is a failure. Of course everyone knows we eventually die, yet somehow they expect themselves to do the impossible. What’s worse yet, is that living forever (in any condition) isn’t even desirable for most. What a mountain of a problem.

Yet I felt hopeful. Here is a doctor that has put his failures on TV for the world to see. That is extremely rare in our culture. In fact, the scene opens with a family who has lost someone relatively young. He tells the widower that he outright lied to his wife. He gave her hope to live when there was none. He couldn’t tell her the truth. Being willing to admit all of that in hindsight though, is incredibly brave in my opinion. And it leaves the door wide open for change and improvement.

The biggest lesson from the documentary, was that the conversations all were happening much, much too late in the game. By the time the doctors faced the truth, it left little or no time for people to attack their bucket lists, say goodbye, get their affairs in order.

The other thing I took away, was how incredibly blessed and lucky Tim and I were. Somehow, we knew to always ask about prognosis. We were able to make the most possible out of the five months we had. We had lots of docs and medical peeps who were honest and open with us. At the very end, our Hospice nurse Patty was beyond outstanding when Tim was grappling with the truth of the end of his mortal life. She didn’t stumble, not even a tiny bit. She was strong and steadfast and honest.

One of the closing comments was short but profound. We need to treat persons, not patients. Period.

My last observation was this: Someone needs to design those damn hospital beds for the end of life that are double in size. It is beyond heartbreaking to admit the reality and not be able to climb in next to your loved one at such a sacred time. Footage after footage showed people in their dying hours with their loving support next to them, but not near enough. If someone wants to market that little nugget, please feel free but mention me when you make your millions.

Thanks Dr. Gawande for making such a courageous documentary.

Link: http://www.pbs.org/video/2365422384/


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Waiting

I’m not exactly a patient person. I hate waiting. Lately, my days have gotten cluttered and even chaotic at times. I feel the tension in my neck and shoulders. Lots of things aren’t in my control and I have to wait for others. I can literally feel the nervous energy waiting creates in me.

The weather has been all over the place and that doesn’t help either. A lot of the things that I am waiting for relate to assistance with my house. And those depend on the weather. I can’t plan anything because I never know who is coming when. For example, at the moment, I am waiting for my college student that does weeding/mulching and she is waiting for it not to rain. I am waiting for the concrete guy to come and stain my patio and seal it. He is waiting for a break in his work schedule and then it needs to not be raining at the same time.

I am waiting for the plumbing supplier to bring me some parts, and he is waiting for the parts to get shipped. I am waiting for a pool guy because the vacuum isn’t working so we can’t get the pool clean, and he is waiting for a second in his schedule and for the rain to stop at the same time. I am waiting for two able-bodied men who are cutting up an entire tree that was taken down, but they need time and no rain. On and on and on. I’m tired of listing all of it so I will spare you the rest.

But my friend has another kind of waiting. So much harder, so un-imaginable. Her 21-year-old son had a stroke during a brain procedure. There is nothing to do but wait. Wait to see how bad the damage is. Wait and see how much recovery there will be. And the nature of strokes? Well, from what I understand there is no rhyme or reason. Could take days, months, years. Things can shift anytime. Or maybe they won’t. I can’t even fathom what that kind of waiting must be like.

My clients have another kind of waiting. After years of dealing with infertility, they are waiting to see if they are getting a baby they want to adopt. The birth mom has five to seven sets of parents to choose from. Wish I could talk to her. I would tell her how amazing this couple is and what a lucky baby she would be to have them for parents. They can’t do anything but wait for the phone to ring. Fulfill a lifelong dream? Another heartbreak?

All waiting is not created equal, that’s for sure. I do know that myself, and the people I have mentioned have loads of people who love and support us. I know you all send positive energy and heartfelt prayers for whatever is going on.  Tom Petty comes to mind, “the waiting is the hardest part.”

Well, I’m not sure if it is actually the hardest part, but it sure as hell is hard.


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Memories

Almost every time I speak, something happens that I think, “Ah, that is the reason I was here today.” I mean, it is always a rush to connect with an audience, and it is an honor to hear people’s personal stories. But sometimes there is a wow moment. You might have read about last September when someone approached me and introduced me to the world of genetics. That was one of those moments.

Last weekend, I had another one. I had a small part moderating in a medical conference. I had my books out on the registration table and tried to be there during breaks, etc.. A woman who looked familiar approached me and asked if I remembered her.

Turns out, she worked with Gilda’s Club, which is a support service center for patients with cancer and their families. (It was started by Gilda Radner.) The summer that Tim was sick, Frankie was just seven-years-old. Miss Kathy held a week-long day camp for kids that either had cancer, or had family members that suffered from it. Frankie went every day.

I remember at the end of the week they had a presentation where the kids showed their projects, read their writing, etc.. I was told quietly, there was a young man who worked with the kids in his early 20’s that Frankie literally grabbed on to. He stuck to him like glue. I have a picture of him holding Frankie, and Frankie had a death grip hug on him. (I would post the picture except I am out of town right now and don’t have the external drive where my pictures are located.) I told them that made perfect sense. Frankie was (and still is) ridiculously close to his brother Colin, who was close to the same age. Plus, well, he was losing his father.

Whenever I think of those events, I get overwhelmed with emotions. Frankie was so so so little back then. He acts so well-adjusted (and still does) that sometimes I forget just how hard losing his father was on him. Him clutching that man was a sign of the quiet desperation that was probably inside of him. “I need a male in my life. Don’t leave me too.” I heard it loud and clear.

With the hundreds of kids these people see every year, I can’t tell you what it did to my heart to have Miss Kathy come up seven years later and ask about Frankie by name. She said that picture went around the office between them for quite a while. She wanted to know how he was doing now. I couldn’t grab my phone fast enough to show her his hockey pictures. Then there was the picture I took in September that I snapped and then looked at it in shock. Where did my little boy go? It is obvious he is a young man now and it was happening right before my eyes without my fully noticing. I told her with pride how he has a 96 average in 8th grade while taking three advanced classes.

She was so happy to hear. She promised to tell the guy she works with. I was happy to know they are both doing the work they are so gifted at. And I knew. Seeing her was why I was there that day. What a tremendous, moving gift. No wonder my family has fared this situation as well as they have. We were surrounded with people like them, who remember us in detail after all these years.

Now I have to wipe my eyes. Thanks for the gift, Miss Kathy and friend. And to the many, many others of you who know you are on the list as well. All our love to you!

 


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Yay!

In a month that has been filled with a lot of difficult situations to deal with, I am also grateful for some sweet moments as well. There has been a mending of relationships which has made my heart smile broadly, which I could desperately use more of these days.

Sometimes the relationships don’t look exactly the same as they did before, but you can experience healing none-the-less. One was a more recent experience that occurred about six months ago. It was a professional relationship. It took some time, but eventually heartfelt apologies were offered and things are going to eventually resume on a professional level when some logistics are taken care of. I had been hopeful this would eventually happen and I am glad to say it did.

The other was of a more personal nature. There was a professional component to it as well, but the real nature of the wounds were quite personal for both parties. This one has been a bleeding wound for over six years. Sure, time made some of it heal, but every once in a while the scab would get agitated and the pain would resume. I wasn’t sure this one would ever get better.

For a couple of years, I thought it would be impossible to feel better unless there was a complete acknowledgement of every piece of the infraction between us. I didn’t think I could ever move on unless I got some sort of assurance that I had been deathly wronged and there was deep regret on the other’s part.

When I asked for this meeting, I was greeted with a polite, “I don’t think it’s a good idea” type of answer. I knew though, that after six years I was in a much different place. I wanted desperately for us to be able to move on without re-hashing everything, without apologies for things we really couldn’t apologize for in a genuine manner. I don’t really think you can forgive without “repentance” entirely, but I do think you can heal regardless.

I knew the risk. Meeting and trying could make it worse. It could do the opposite of provide closure. It could make the original wounds even worse. But deep in my heart, I knew it was a risk I had to take.  The relationship we had before the rift was of such high value to me, it was a greater risk to leave it unhealed without trying.

Six years of waiting. That part of our conversation, actually probably only took about 20 minutes. I set the tone by reassuring him that I had no desire to re-hash the past, I just wanted to move forward more comfortably. I knew we would never have the same relationship again, but I was hoping that somehow it could be better than it currently was.

He admitted that what I had intuited over the years was indeed accurate. I just didn’t understand fully why. He explained that I hurt him as well. He explained why he stopped trusting me. Once I heard him out, it made sense to me. Not to over-simplify a complex situation, but in some ways it was truly a misunderstanding. He thought I meant “A” and in actuality, I meant “B”.  In fact, “A” couldn’t have been further from the truth.

I think the corrected perception helped immensely, but we both knew it didn’t change the hurt it caused when it originally happened. And it didn’t change the last six years when that perception remained in place for him. At the end of the conversation, he actually thanked me for intiating the meeting. Big shift from being hesitant to even talk to me.

The future will tell how much healing occurred between us. I do know that for me personally, a very heavy burden was lifted. There are still scars. Those don’t go away. The relationship is still forever changed. But some of the very significant pain has been altered in a favorable direction.

Life doesn’t always go this way, but it confirms the challenge to myself and to all of you – I want to stay invested. I may need to invest more wisely in my life at times, but connection, love, relationship, respect, care… they are worthy of our time and effort. Tonight, I will breathe just a bit easier, with six years of weight significantly lessened.

Big, big sigh. Not of annoyance, but of relief.

 

 

 

 

 

 

 


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Soul mates

I recently had two referrals for grief counseling. One was male, one female. Both lost their spouses recently (three months or less). And both told me their spouse was their soul mate.

I think the older I get, the less I know what that means. I used to think it meant that person that could finish your sentences because they think pretty much the same way you do. Sometimes now I wonder if your soul mate is that person that just never goes away. If you know someone’s dark side/sides, all of their imperfections, and you just love the heck out of them anyway, maybe that is your soul mate.

Anyhow, I don’t think I’ve ever met mine. Tim and I loved each other. We worked very hard at becoming excellent partners to each other. I think we definitely achieved that. But I wouldn’t have called us soul mates. I don’t think he would have either, not that I ever remember talking about it.

I digressed. The point is being an observer of grief, I found these two people who approached their losses very differently. I honestly think part of it is due to gender. I’m not sure all of it comes down to that one factor though. The guy came in and expressed his grief verbally, but outwardly seemed incredibly together. He didn’t cry, although he said he did often. He felt he mostly came because his kids and doctor worry about him. He said he understood grief and seemed to be able to articulate his emotions and the whole painful process. After a few days I got a polite text that said he would not be returning to therapy. I found myself torn between knowing that people express grief differently and we yell all the time about how there is no formula to grieve the “right” way. But part of me wondered if he was keeping it all on the head level. You can talk about grief without letting it into your depths. I suspect that is why Dr. Grace referred him, that maybe she was wondering if there was more beneath the surface. But it looks like I won’t find out.

The woman was entirely different. She continues to come in every week and wonders if she has lost herself. She has panic attacks at times, and usually cries through most of session. She thinks she is doing terribly. I keep reassuring her she is just fine. She is simply in great pain. Tremendous, horrific pain. It may never leave her, but it will change. It will lessen, it will morph. She has already seen some shifts in herself and credits that to the new medication Dr. Grace put her on and the sessions she has had with me. In particular, she has found breathing techniques immeasurably helpful. She can’t believe something so simple can be so powerful.

Again, perhaps this is just the difference between male and female grief. Perhaps this is grief embraced and grief denied. But it doesn’t matter. I know it sounds corny, but I truly mean this: I count it an honor and sacred responsibility when anyone walks in my office and allows me to see their grief, in whatever form it is. It heals little pieces of me as well. So thanks to both of you, and all those clients over the last 20 years that have enriched my life!


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Deja Vu

I had a visit from Tim the other night. It didn’t come in a dream or in the form of a hummingbird. He came embodied in his now 14-year-old son, Frankie. We have season Sabres tickets (NHL hockey). Tim had them for years and years. When I first met him, it drove me crazy. I thought the household passion for hockey was ridiculous. I remember Colin and Matthew playing mini-stick hockey in the living room and I would say in disgust to my mom, “Who the heck plays hockey in the living room?”

Of course, I have had to eat my words (and my attitude) about a thousand times since them. Frankie and his brothers and friends still play mini-stick hockey all the time and of course, the best place to play is in the living room. I get it now.

We often struggled financially for the first few years of our marriage. I finally saw a purpose for those damn tickets when the Sabres made the play-offs. People could sell their tickets for enough money to pay for the entire next season! Tim was mortified at the mere suggestion of  selling play-off seats and I couldn’t believe it. Then I went to a play-off game with him. Holy cow. I couldn’t believe it. The energy was out of this world. I never asked him to sell those tickets again. The Sabres in the play-offs? Priceless. No amount of money would be worth it. (Ok, maybe a million bucks or something.)

Usually Colin and Frankie get the tickets. They are super great seats. Here is our view of the ice:img_20170110_185749335

See what I mean?

Anyhow, I decided to take Frankie to the game this week. He is a teenager, so of course he wasn’t thrilled with the idea. In fact, he said no at first, but then he came to his senses. Now, he was only eight-years-old when his dad died, but sometimes it freaks me out by how much he can mimic him. Part of me was thinking that I’m the parent so I need to put my foot down. Then I thought better of it and decided not to rock the boat any more than was necessary. Getting him to spend the evening with me was miracle enough.

The first argument, I knew, was going to be parking. Tim knew where to park so you didn’t have to pay. I would only go to one game a year so I would tell him that I wanted to park close and pay. It is cold and miserable in Buffalo in the winter, but he was driving so I always ended up walking and freezing my ass off. Frankie is quite indignant about paying for parking. He thinks it’s ridiculous. It was raining and the winds were horrid, but we parked where he told me to (which was of course, where his dad used to) and walked to the arena. I was cursing under my breath…LOL.

I tried to engage him in conversation throughout the game, but unfortunately I am hopeless. I kept saying the things that absolutely drive him bonkers. Such a woman. I don’t get the intricacies of the game so I comment on things I know. “Hey, number 90 is Ryan O’Reilly? He is the fathead you got for Christmas right? I didn’t realize who he was. He is my favorite player.” Frankie looks at me in shock. Why is he my favorite player? Now I am silent. I can’t possibly explain to him that last year when Emily was in town, she and her friends and I went to a game. Number 90 always warms up the same way and he is different from the other players. He does these stretches that look incredibly sexy and naughty on the ice. I just tell Frankie, “No reason.”

More dumb comments from a mom. Hey, a lot of the players have beards now. What’s up with that? What will they do when it is play-off time when they are supposed to grow beards? Again, Frankie just says, “Grow their beards longer.” He hates that the only thing I seem to notice is the looks of the players. What can I say? I’m a single woman and some of the players that still have teeth are pretty hot.

A second miracle occurred. Frankie agreed to a selfie and even said I could post it. You can tell by his face that he wasn’t thrilled, but he let me.img_20170110_185509102

It was a great game. We actually won. There was a big fight in the first period. Other than embarrassing Frankie by dancing when we scored, we managed quite well together.

Then the drive home (after the long walk to the car) and more arguments about taking the side streets home rather than the thruway. I spent the night with my teenage son and my deceased husband. It was a great night!


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Collateral Beauty

I didn’t blog last week because I just didn’t feel inspired. Now I am snowed in and I just don’t have the energy… Excuses, excuses. Anyhow, I am going to cheat. I can because it is my blog so who is going to tell me I can’t? LOL!

I went to see “Collateral Beauty” this week with my friend Summer. I heard it got smashed down in the reviews. I can’t imagine why. I think it is one of the most brilliant, poignant, and profound movies about grief/loss and death/dying that I have ever seen. If you have the depth to see it, the lives and plots intertwine cleverly and many types of loss are addressed. Ok, not one of the most, THE most.

Will Smith gives you some visuals of grief that you will never forget. There are some lines in there that entire books could be written about. Summer cried several times throughout the movie. Me? I couldn’t cry. I was beyond tears. I was moved and riveted with my stomach squarely stuck in my mouth.

A perfect example of bittersweet. It was gut wrenching but I wouldn’t have missed it for the world. If every person could watch it and grasp its meaning, I would never write another book or blog, produce a webinar, give a lecture. It just wouldn’t be necessary.

Personally, I couldn’t have watched it at a better time. Or a worse time. My dreams have been tormenting me by night, even though my conscious days have been fine. The movie was smack in the middle of the torture and I’m sure has inspired the last set of horrendous dreams.

Nevertheless, this blog is a blatant commercial. I can’t say much else about the movie because I would not want to give any of it away. Take your tissues and go. If you have experienced a significant loss firsthand, I would bet money that you will resonate with it very deeply.

Bravo. Sometimes the critics are spot on, and sometimes they have no idea what they are talking about.