Connect to my post on Totally Buffalo “If you could live forever… would you want to?”:
I can’t believe at age 50 I feel like I’m back to square one. I know I’m not alone in this. Who would have ever believed that the big questions like career and partners would still be up in the air and a struggle when your life is more than half over?
I did a presentation this week about two hours away. A whole group of us participated in a death/dying conference like the ones we had done in Buffalo. It went great. Almost every speaker was dynamite and the audience seemed receptive and even enthusiastic.
I was the last speaker of the day which was tough because I knew everyone was tired. It went over extremely well though and I knew I had reached people by the feedback. The problem was, I didn’t make a penny.
So frustrating. I know I possess a good skill set. I can speak and I can write. I can do them both very well. The other panelists all came from companies or hospitals they represent. They are getting “paid” because it is part of their salary. I’m the only lone ranger in that sense so if there isn’t a speaking stipend (which 90% of the time there is not) then I can only hope I sell books.
I didn’t sell one book. I watched the woman next to me sell about 10 books. Same topic, different angle. Both of us good speakers. WTF?
This is not new. This is the scenario 99% of the time. I am well past the point of being able to write/speak simply because it is helpful to others. My heart is there, but my pocketbook is not. I am the sole breadwinner in my house. I have a family to provide for. And my social security is being cut in half in less than a year. Holy crap that is scary.
I’m going to have to reinvent my career and I have no idea what to do. Well, actually I have tons of ideas, but knowing which path to follow is confusing at best. Add coping with severe depression on almost a daily basis now, and it is beyond overwhelming.
What do I want to be when I grow up?
I thought that was settled years ago. I even had a brave moment this week and attempted to go on a date. I got stood up. I know it isn’t personal because we hadn’t even met yet, but cripes. Stick your toe back in and find out the water is frigid.
That’s was scary about being so depressed. You have to take risks in life and be proactive if you want to meet your goals. But if you are already down and out, you can’t afford to fail. At anything. What a freaking catch-22.
For the moment then, I will just stay stuck. Not sure what the heck to do with myself. I know I can’t stay this way, but I’m terrified to do anything else, with any of these areas of my life.
Maybe 80 is the new 50. Maybe I just have to wait another 30 years and things will fall into place. One can only hope :).
I am presenting next week as part of a large panel and am going to attempt to integrate Power Point for the first time. I know, I’m behind the times. They are very simple slides, but I’m long past due for getting a more polished look for my lectures. Same topic as usual. Why is it important to confront the uncomfortable concept of death and dying?This presentation is going to be a little different in that besides talking about my experience with Tim, I am also going to talk about a current situation.
I met a very, very dear friend after Tim died, who has become in some ways like a second father. He’s just a couple of years younger than Dad and bears some physical resemblance to him as well. He has actually met my dad a few times. He has been in the hospital the last several weeks. I have visited when I can, but recently the family has requested no visitors outside of family. I certainly would not ever want to offend the family, especially in such a stressful situation. The problem is, what is the family wants something different than the patient.
My friend had reached out to me and said he wanted me to visit. I even double checked to make sure I understood correctly. That is quite a dilemma. Why would the family not want me to visit? I don’t know, but I can attempt to make an educated guess.
Things can sound quite sensible in theory when you are talking about them outside of your personal experience, or especially outside of an actual acute situation. When you choose a health proxy, for example, many people think the appropriate person would be the person you are closest to. Actually, much more important than that, the proxy should be the person who is most likely to honor your wishes. Sometimes what we want for our loved ones is not what the actual patient wants. When the time comes, you might find it difficult to do what your loved one wants if it is different from your own desires. If you are emotionally in deep, doing the “right” thing (in this case what the patient wants) can become very cloudy.
My often mentioned friend Darren articulated something that really struck me. We were talking about this situation and in general about how I often am trying to do the right thing and somehow end up “being the bad guy.” He said it is because I bring light to the dark corners of the room that haven’t been swept out yet, because I’m not afraid to go to the difficult places. I loved that. Not sure I deserve that much credit, but it felt really great to hear.
One time when I was visiting my friend, he started to open up to me about what I loved “end of life stuff” such as how his illness was affecting his family. Then there is the big question of why is this even happening? That is the one I always say I don’t think there is an answer to. Why do we die? Because humans don’t live forever. We all have to die at some point. Every one of us. Because there are cancer cells we can’t control. Because there is disease, violence. Because people make bad decisions sometimes. But sometimes it is just because we are mortal.
I did my best to work through the labyrinth with my dear friend. In the background, one of his family members was bustling around saying things like, “Don’t worry. This is just a bump in the road,” or “You will be back to normal in no time.”
I cringed. He has stage IV cancer and there are no treatment options left. No, this is more than a bump in the road. This is nearing the end of the road. No, he will not be back to his old self.
I think he must know deep down. I think that is why he wants to talk to me. I can handle the conversation. I wonder if deep down he understands he can’t really talk to his family member. But now it feels like I’ve been shut out.
I don’t know how it will play out. At this point, he has changed his mind about visitors. Was he told that I am acting crazy? Or is he just not up to company? All I know is that at one point he specifically asked me to come and I couldn’t go. Well, I could have but I would have greatly upset the family. That is certainly not my goal.
It’s all heart breaking. I dream about him and I keep thinking if I don’t get a chance to see him again, I am at least relating to him on that level. I just don’t want him to think I have abandoned him in this very fragile time of his life. He has given me hugs and hand holding many, many times when I’ve been down and out.
Keep him in your prayers, and the family as they grapple with accepting the upcoming loss of such a wonderful human being.
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.
Admittedly, I am more of a glass half-empty person that I am a half-full. I think most people err on one side or the other. If you’ve ever been to one of my lectures, you know my philosophy is that the key to healthy living is to balance both truths.
I have a few half-full folks in my life. They enjoy my blogs and Facebook quotes that are more upbeat and positive. The thing is, I’m a professional writer whose specialty is the topic of death/dying and grief/loss. In my practice, my specialty is relationship counseling, but you can’t talk about any of that without a healthy amount of focus on grief/loss. So my half-full friends, you will just have to be patient with my emphasis on being in touch with the pain in people’s’ lives. It happens to be what I am good at.
Sometimes there is so much happening around me, it’s hard to decide what to write about. (As opposed to those weeks when my mind is blank.) Last week I wrote about some great men. This week I”m going to focus on a couple of women that I know that have amazing strength.
My readers are already familiar with Summer. She was a rock for me while Tim was dying. She is a pillar in her church family and the community she lives in. It makes it hard to be her BFF sometimes because often we only get brief moments to chat every so often. That’s the life of someone who so many people depend upon. The year 2016 has been fraught with challenges for Summer that I can’t even begin to enumerate. I mean it’s stuff that tops the stress chart scales. Day after day after day. The last week she has been working with the hospice team to help usher her 93-year-old father-in-law to his final home. It brings memories of Tim flooding back. Listening to her exhaustion from the roller coaster of that daunting task is about all I can offer her. Her “dad-in-law” is one lucky man to end his life with the dignity that Summer and her family are gifting him with.
The second woman who has recently touched me is Ray. She is only 33-years-old, but I think her soul is much older and wiser. She is one of my students. We still chuckle when we talk about how we first met. She was being a bit overly assertive and feisty along with some of her peers. Our first class together started with my own assertion of myself as the graduate college professor- i.e. I was the one who called the shots, not the students. We laugh because we all have grown to deeply respect each other (and very quickly!) that it’s hard to imagine we had a rocky start.
Ray is a cancer survivor. I don’t know what the details are, but I know that she walked into my classroom already having learned so much about life, that some will never accomplish at twice her age. Ray was just told the cancer is back. Yep, cancer is such a beast. An unfair, vicious monster. This time, it is in her spine. It requires surgery, affording her a whopping 50-50 shot at walking again. Oh, by the way, Ray, did we mention we also discovered that you have MS?
We decided that we couldn’t possibly have our last class as scheduled, because it is the same day as Ray’s surgery. It just wouldn’t feel right. And it isn’t exactly appropriate for us to have class in the hospital. We all adore her, but I’m sure her family would like to take up the space around her. We are having our last get together at my house tomorrow night around a campfire. They are all of age so I told them they could bring their beverage of choice. And we are all praying Ray is feeling up to attending.
My first cohort of students I had for one semester. I still keep in touch with one student on occasion, and another student I talk to regularly, even after her move to North Carolina. This group of students I’ve had for an entire year. I feel the weight of grief and loss already. I try to give them my heart and soul and they fill me up with their appreciation. I’m sure we will stay in touch, but let’s face it. Things are never quite the same.
But I’m never away from the thought that the weight I carry from knowing I will miss the amazing women I have grown to admire over the last year, is nothing compared to the weight Ray carries. She is a rock star in every sense of the word. She has acquired strength and experience that a woman her age should never have to have earned the right to own.
My hat is off to you, Ray. And to Summer. And to countless others of the women I know who are towers of strength. When my life feels overwhelming, part of what brings me back is knowing some of you carry much greater burdens than I, and with such grace and love and power and inspiration. Know you are loved!
notes & essays on daily life with terminal cancer
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The life of a writer and survivor of loss.
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