Tuesday, November 18, 2014

Compassion Fatigue

Back on September 28th, when I saw the "Tara" license plate as we set out on the last mile of the Boston Marathon Jimmy Fund Walk route, I remember my first split-second thought.

That is not for me. 

It was a strange instinctive response to such a coincidence, and I did not think it through at the time. I have, however, thought about it since. In fact, I have been waiting for the right moment to write about it. That moment is tonight.

After I crossed the finish line, joyfully shocked by the crowd gathered there, I spent a few minutes with my family and friends who had come into Boston to join the fun. One of those people was my amazing friend, Amy K.

I have used the term, "superpowers" before when describing my mother, so that should provide some sense of how much I mean by the term. Well, Amy K has super powers of her own. I would describe those powers as a true gift for giving. She gives so much to so many people that I would need a full book, never mind a blog, to scratch the surface of her goodness. Most amazingly, she does all of those things for all of the right reasons. She simply loves to help other people.

I will never forget talking to Amy that Sunday morning in Copley Square. She told me that her friend had a daughter with brain cancer. I remember it so vividly. Mostly because Amy once again centered me as to the real purpose of those miles and those dollars.

Amy went on to tell me that she needed another Team Tara shirt to give to her friend's daughter. Then she told me the daughter's name. Yep. It was Tara.

I felt the hair on the back of my neck stand up when Amy told me this. I don't even know how I responded or if I said anything. But in my head, I was back in the moment less than an hour prior when I saw that license plate.

That's not for me. 

It wasn't. I think it was for her.

*   *   * 

I met Tara W for the first time after work last night at a Boston hospital across the street from where I have been working on a long-term assignment. Amy, who had already visited Tara in the hospital the week prior, had arranged for the two of us to visit her again. See what I mean?! Superpowers.

Tara W was diagnosed with brain cancer in April 2012. At the time, she still lived in Oklahoma where she was born just 28 years prior. After experiencing headaches and a spell of severe disorientation just months before she was set to graduate from nursing school, Tara's doctors discovered a glioblastoma in her brain. Excuse my French, but I swear when I get really upset. And I know now that a glioblastoma is a fucking brutal type of cancer. Fucking brutal.

As one would expect, the news flipped Tara's world upsidedown. All of her plans were derailed. As she explains it, it was as if she became a different person. A sick person. A person with brain cancer.

Tara underwent brain surgery to remove the tumor. She then began proton therapy, which is similar to radiation therapy although it is more targeted so as to try not to damage surrounding brain tissue.

After chemotherapy and proton therapy were complete, Tara was feeling confident that she had beat cancer. After all, she felt well and she had managed to graduate from nursing school and earn herself the job she had always wanted. Everything was in place.

A few months after her therapy ended, Tara went in for an MRI of her brain. Her father accompanied her to that appointment. When the results were ready, Tara told him he could wait outside while she finished up. She expected good news. She got the very opposite.

*   *   *

Amy, Tara, Tara's mother (Joie), and I had a lovely hour together last night while the cold rain pounded the city. 

When it was time for us to catch our train, I wasn't ready to leave. I had discovered that Tara wanted to share her story but since that was not easy for her to do (her second brain surgery left her blind in her right eye and her medications make it difficult to type), I asked her if I could help. She enthusiastically said yes. I was honored. 

So we decided that I would come back to visit the next day (today) during my lunch break. 

This afternoon, I made my way back up to Tara's room. I was excited to see her and to help tell a precious sliver of her story.  

In the first 10 minutes I was there, a Dana-Farber fellow and a nurse paid a visit. Tara made only one request between the two of them. She asked the nurse for some water and some ginger ale. 

*   *   *

I am not sure that Tara would agree, but I felt an immediate connection with her. We talked about fun stuff, like her passion for running, and we talked about dark stuff, like the sheer terror we both feel when we see a friend relapse.

Tara told me about the day that her doctor in Oklahoma reported to her that her cancer had returned. Obviously, she was crushed. As she explained it, her positivity waned as she tried to comprehend the statistics of her disease. As she tried to process the fact that, according to clinical data, she would most likely be dead in a few years. Surprisingly, I didn't cry when she told me this. I think that is because I honestly could not (and cannot) comprehend such injustice.   

I am working on a draft piece about Tara that we will share once she has had the chance to review and revise it. This is not that piece. This is merely an introduction to this brave and lovely person. And it's something else. Join me as I take an abrupt left turn. 

*   *   *

Tara is confined to her hospital bed until she has a seizure. She has been having terrible and mysterious seizure-like episodes for a while now and the doctors are observing her around the clock to figure out why. Tara's thick, dark hair is parted this way and that to make way for the wires taped to her scalp. The wires feed into a screen next to her bed that tracks her brain activity. 

During my lunch break, I sat in a chair at the foot of her bed (padded on the bed rails in case she has a seizure). Actually, for the first few minutes of our conversation, I sat to Tara's right side, where the chair had been placed, until I remembered that she could not see me out of her right eye. When I moved to face her more directly, I could tell she was relieved. I felt terrible that I had not thought about that immediately upon sitting down. 

As we talked and I typed some notes, I noticed that Tara was squinting uncomfortably. The shades to the room were closed but a few beams of sunlight were streaming in through the holes where the strings stretched through. I got up to try to fix the problem.  

"No, no, it's okay. It does this every day but it doesn't last long," Tara explained. 

"But it must be really annoying to have the sunlight right in your eye," I said. 

"Yes, it is, but it's okay." 

"No, it's not," I insisted stubbornly, as I searched around for something to block out the sun. I found some paper and we moved it around on the window until we found the holes that were causing the problem. 

"I just need to get some tape," I explained, as I headed out to the nurses station. 

When I approached a nurse, she looked at me as if I was terribly intrusive. I could see that she was examining my badge, which I forgot I had on. (It is a Harvard Medical School Consultant badge so I can see partly why she would have been confused.) I explained that I did not work at the hospital, that I was just visiting a friend. But that did not ease the tension in our conversation. 

I went back into Tara's room without any tape. 

A few minutes later, the nurse who had visited earlier -- the one from whom Tara had requested the water and the ginger ale -- came back in. She was no doubt agitated by my request for the tape. 

"Why are you putting tape on the windows?" she asked, full of judgment. 

I explained. The sun was behind a cloud at the time, and I wished it would come out so she could see it shining in Tara's eyes.  The nurse looked at me blankly. 

I explained some more. I showed her that if we just blocked out a small part then it wouldn't be in Tara's eyes. But it was clear -- the nurse had no interest in helping. 

Before she left, the nurse eked out an explanation that we could move the bed to avoid the sunlight if it got bad again. She said something about the camera that was focused on the bed so they couldn't move it too much. But she didn't care and it was painfully obvious. It was even more painfully obvious that Tara was far too selfless to call the nurse back into the room the next time the sun came out. 

When the nurse left, I unloaded. I was pissed, and told Tara why, and she smiled. I tried not to get distracted for too long and a few minutes later, we continued with our prior conversation. It's cliche, but true -- we laughed and we cried together for the next half hour or so. And I dropped several f-bombs along the way. Because seriously ... cancer is so fucking awful. 

When Joie arrived a while later, I couldn't help but unleash my wrath about the nurse and the sunlight and the complete lack of compassion. Tara doesn't ask for much and this lady can't even help tape a piece of paper to the window?!? Joie agreed, while entertained by my passionate venting. 

I left the hospital full of emotion. Admittedly, that emotion was somehow funneling itself into one issue -- the nurse and her complete lack of compassion. 

When I got back to my office, I had a bit of panic when I realized something. The nurse had never brought her water or her ginger ale. 

I texted Tara to ask if the nurse had brought it yet. 

She didn't lol, was all she texted back.  

*   *   *

I truly believe that nurses have incredibly difficult jobs. They take care of fragile people, and I have already written about how complex fragile people (including myself) can be. Everyone knows that nurses often work long shifts and that some are overloaded with patients. I get all that, not by first hand experience, I admit, but by careful observation over the last few years. 

In a text later tonight, Tara explained that she thinks many nurses have "compassion fatigue." I couldn't agree more. And I don't think nurses are the only ones who suffer from that. I saw it in teaching, I see it in lawyers, and I see it out in public (like on the train, for instance). It's hard to be compassionate all the time. It's hard to care constantly about another person's needs. But that's no excuse. Tara's nurse should have given me the f-ing tape and if her compassion is too fatigued for that, she should find another job. Period. 

I know I have high standards and I know I have my mom to thank (nope, not blame) for that. But we have to do better for those who are fragile. We have to. We have to tell them that we care enough that we do not want them to have to squint uncomfortably even just for ten minutes every day if we can do something to avoid it. We have to find the tape and hand it over with a smile. A young woman with brain cancer deserves that. 

*   *   *

The news that Tara's nurse had not, two hours later, brought her the water and ginger ale boiled my blood, and I sent Tara several repeated emoticons to express that. 

In response, Tara sent me a photo to make me feel better. Joie had found tape in the room and had taken matters into her own hands. 

*   *   *

In trying to decide how to wrap up this lengthy post, I was reminded of the card I brought Tara last night. I usually think greeting card messages are inadequate but this one was perfect. The outside had a cartoon of a big dark cloud and a person on a ladder trying to wipe the cloud away. The front said something like, "If I could, I would take away the dark clouds..." The inside had a bright sun and said something like, "And give you a sky full of sunlight." I wish I could do that for Tara and for countless others. But I can't. None of us can. 

Nevertheless, we must try. We must not excuse compassion fatigue. Sure, this high standard sounds difficult to meet and sometimes, it is. But in my experience, it's usually pretty darn easy to find the tape and cover up the little holes, or bring a glass of water and a ginger ale when your patient kindly requests it. I mean seriously ... brain cancer is naturally complicated. But compassion doesn't have to be. 


  1. To be a fly on the wall when you are angry!! I agree that if something can be done to ease someones discomfort you should do it. Even if it does not matter to you it matters to them. Just do the right thing...simple as that

  2. Just read this post. I have chills. Xo