From the archives …
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I was standing in our office’s common room, where one of our Hospice Care Consultants (HCC) was discussing with a nurse a possible patient to be admitted to our hospice program. They were talking about issues that come with organ transplantation, being eligible, getting on the list, criteria, etc. all in an effort to determine whether or not this gentlemen would fit the guidelines for hospice admission. The HCC asked somewhat rhetorically, “Do we know anyone who knows anything about organ transplants?”. A social worker standing next to me kind of smiled, looked at the HCC, and wordlessly pointed to me. Like someone who just experienced an ah-ha moment, he excitedly exclaimed, “That’s right! I forgot! This is great!” And that’s how I met Al.
Al was a man about my age who, along with several other medical issues, was in pretty bad shape from liver failure. His primary physician felt it was time for Al to benefit from hospice services. On the other hand, his hepatologist was still holding out the hope for a liver transplant. The story is long and complicated, and will be featured in another post, but for today’s’ purpose, Al was admitted to our hospice.
Al was hard to find – he was doing his best to keep going. I happened to be the first of our team to sit down with him. He told me of some familiar sounding problems he was experiencing. Bouts of confusion, poor nutritional status, trips to the hospital because of his sodium levels, and more confusion. He felt terrible and was weak. But expressed his goal of getting himself at least better to the point of transplant. He told me that he was still on the waiting list. When we spoke of what hospice was about, he was emotionally appropriate in his expression that he knew that his probable outcome would be his death. We talked about his faith. We talked about his hopes of an afterlife. He cried. We prayed.
Then we got back to his hopes of a today life. He proudly stated that the previous Wednesday he had purchased two motorcycles, and that the first thing his friend and he would do when he felt better is “hit the road”. Hope is a funny thing.
That night Al received the news from the hepatologist’s office that all his appointments had been cancelled – that he didn’t need to see that doctor again. He knew what that meant – transplant was, at best, on the back burner – or, he knew that that burner had just been turned off.
The next day he was finally visited by the rest of the hospice team. One could only imagine the impact of hearing late one afternoon that his hope for a transplant was gone, and being visited by hospice people the next morning. That’s a pretty big jump to make in a short period of time.
We were getting ready for our weekly team meeting, and I heard a couple of my colleagues again talking about Al. They were laughing about the new motorcycles and all the money he was spending. One stated, “this has to be one of the worse cases of denial I’ve ever seen.”
Flash back. I was in an ICU after nearly bleeding to death. I heard what the doctors were telling me. I knew that I needed a liver transplant, but it was unlikely I would survive long enough to receive one. But I was doing what I normally do – trying to be upbeat, and telling some terrible jokes that, borrowing from Larry the Cable Guy, were funny, I don’t care who you are or what situation you are in. My nurse of the day whom I was trying to at least get a smile out of, looked at Sandra and said, “He just doesn’t get it – he’s in denial”.
I’ve said this before, and I’m going to write it now. In over thirty years of working with other’s end of life concerns, and three years dealing with my own, I have never met anyone in denial – the only the Nile I know is a river in Egypt. It’s a beautiful river. It’s a river that defies logic as in runs south to north. Sometimes life defies logic.
I know, I’m well versed in the stages of grief, a theory originally posited by Dr. Elisabeth Kubler-Ross, and later discredited by Dr. Elisabeth Kubler-Ross. My question is why are we so quick to label someone who is not reacting to lousy news in the way we think appropriate as being in denial?
I’ve seen people recoil. I’ve seen them react with frustration and anger. I’ve seen them become physically ill. I’ve seen people find a quiet place, and refuse to be disturbed. Like Al, he was planning for a tomorrow that he hoped would come. For me, I was dealing with the moment, afraid to look too far ahead. But none of these is denial. They are simply ways to deal with the undeniable.
As I said, hope is a funny thing. It is vital to being human. Hope by necessity needs to be amorphous – without a defined form, of no particular character. It’s buying motorcycles when you know you will probably never ride again. It’s finding humor in the midst of intense physical and emotional pain. It’s a way to keep moving forward, because there are no guarantees – not even that Al would die and that I would live. But Al did die. And I did live. Al died with hope – is that bad? Not if we don’t define the substance out of hope and deny it’s existence because it doesn’t look the way we want it to. I’ve always said there is no such thing as giving up hope – just a long as you are willing to redefine it.
It’s funny, though – I’ve had to learn live with hope. It was not until this past Christmas that I was willing to even think of planning something months away. Always waiting for the other shoe to drop. Looking for signs of rejection. Being as compliant as could be, with the one missed step of having a horse throw me through a fence. But I never wanted to get too far ahead of today. But this year, I decided to take a step in hope – I gave us a cruise scheduled in May – a full six months away from the day I paid for it. And I didn’t buy the insurance, because I wanted to give us the best cruise I could afford without spending some of that money on a very expensive “just in case”. Is that denial? I hope not. But it is a step of hope for me – one I wouldn’t have even contemplated a few years ago. Today, thanks to my donor, I can allow myself to first dream, then hope, and then plan for a future. In our world that’s called the gift of life.
Look, here’s the point. Bad things happen in life – that’s undeniable. One hundred percent of us have to face those bad things at some point in our journey through life. That’s undeniable. But do we linger on that? Most of us, no. Are most of us in denial then? Absolutely not. Call it faith, call it hope, call it going with the flow – but it’s not denial – it’s life.