On Being... Or Not

(written April 29) Throughout the day, there have been assorted “deep thoughts” that ranged from pondering to brief glimpses of a truth still hidden below. The connection has been on the topic of “being” or existing, and it’s significance. Here’s the trail:

After 3 weeks of fluctuating, but almost constant, pain, there seemed to be an improvement late yesterday. It wasn’t that all pain was gone, but of the 3 primary areas, one of the major one had lessened. But alas! Rather than an improvement, it was just a tease.

"Why does it seem that one step forward leads to two steps back at times? The frustration is worse than not improving because you get to face disappointment once again," I wrote as my facebook status. That was fairly “bold” as I rarely post much concerning my medical situation. Though only those that are aware of the actual situation would understand the message beneath the words. Others might think it was something minor.

 A friend shared that she’d been listening to an interview on the radio that spoke to that. When I followed her link, I was led to an intriguing blog article,  “Contemplating Mortality: The Need to Remember That Death Is a Human and Personal Event, and Not Just a Medical One" (link to article)

This was a topic I have previously pondered at great length, though not so much recently  My initial interest in the subject was prompted by my parents’ deaths. My father’s death, in particular, taught me some important spiritual lessons. It affected me so much.that I wrote a book, The Valley of the Shadow,  about the experience, hoping to comfort others by sharing what I’d learned. 

The article, “Contemplating Mortality” was by Dr.Ira Byock. It was part of a series of things on the topic, “On Being,” which is fascinating. Some people avoid the topic of death, giving it an artificial power which haunts us.  The title and article reflected my own thoughts, that death, at worst, is simply another step on our life’s journey. But I believe it’s much more than just a part of the process. Death is a time of joy and celebration, at least for the one that dies.  

Dr. Ira Byock said, “That edge of life — which our miraculous medicine allows some to perch on longer than ever before — can be a time of unparalleled repair and celebration.”  This resonated with me, especially the part about "perching on the edge," as that's my status.

As far as accepting death, Lupus has been a part of my life for almost twenty years so there isn't a healthy/then sick moment. This chronic condition has been ignored because it’s “always there” yet has also been a shadow over my life, a quiet threat. While it was integrated into my life automatically, it has only been the past few years that I’ve really considered it’s real impact as the cumulative effect began to endanger my life. 

While I have always acknowledged lupus, the limitations imposed were not as graciously accepted. Though this determination to persevere has most likely led to at least a partial victory on my part. I didn’t roll over and play dead. My doctor once told me that while he greatly admired my positive attitude, at the same time, I was the most exasperating patient he had because I pushed the limits. As a matter of fact, I tended to reach the limit and then push on a bit more.

Once I was facing pending kidney failure, my doctors started talking to me about my need for palliative care, especially counseling, which was immediately refused. He was crossly told that he was capable of providing any medical care needed and I had a pastor to talk with if  I needed counseling.  Looking back, I now understand his suggestion. It doesn’t do any good to have a pastor available for counseling if he doesn’t know, and you don’t accept, the reality of the situation.

The thing I didn’t understand about palliative care was that it wasn’t just for dying, but for dealing with “life-limiting” illnesses, which lupus had certainly become. I saw it as the same thing as hospice for the end of life. Since I was working full time, I obviously wasn’t dying! While I never accepted the need, my doctors pretty much went on as if that were the plan. 

They treated the flares and resulting conditions, yet made sure I realized we were dealing with management, not curing. Since I’d been dealing with lupus for 15 years, the whole “management not curing” part was treated seriously. While others seemed to notice I was falling apart, I planned to continue on as if nothing were happening. (My head knew, but my heart refused to consider the possibility.) The other components, emotional and spiritual support, were covered, as I have an awesome lupus support group and close friends I confided in. Occasionally, I met with my pastor to talk, and in between, flooded him with lengthy letters, which he may or may not have read. 

When palliative care was suggested, I rebelled, as I didn’t need such a thing… or did I? Before this could ever be fully explored and answered, suddenly, by definition at least, I qualified for hospice care and was dealing with my own mortality. The news that various systems were doing worse, in a weird way, eased some guilt I had been feeling. It seemed that no matter how much I pushed, it was getting hard to keep going. This explained why. It wasn't "my fault" or lack of effort on my part, in other words.

On April 3, 2009,  I was told I had 6-9 months to live. It was a shock, but not a surprise. The experiences surrounding my dad's death just a few years earlier made news of my own impending death much easier to consider as I knew not to be afraid. As most people probably do, I did the math in my head and figured out this would fall sometime between early October, when my daughter was expecting her first child, and Christmas. 

My biggest concern at the time was how on earth would I tell my children? Or should I? At first, my pastor was the only one I told, and later, my best friends. They were told before my family because at the time, I needed the emotional support. My only grief was knowing it would make my children sad.  Telling them a few weeks later was the hardest thing I’d ever done. In the end, I wasn’t even the one that told them. They were all gathered there, but the words wouldn’t come, so my pastor stepped in and handled it.

This warning gave me time to deal with dying. It was a process of steps. The first few months, I think I was in shock. By the time I finished the school year  (and retired) I was beginning to consider options. As I prayed, read, and wrote out my thoughts, my overwhelming thought was my children.  My own mortality didn’t bother me nearly as much as concern for them.

By June, I started to consider what I wanted out of life and began to wrap up loose ends. This involved a visit to my beloved mountains and a reunion with extended family. My daughter, dealing with her first pregnancy, seemed in denial about my condition. In one of our few conversations about it that summer, the subject of Christmas came up. I said I hoped I’d be there. She said, “You have to be! You can’t die during Advent!”  (I'm a little obsessed about Advent, writing devotionals, planning church activities, and decorating multiple trees, so understood her response.) It was then I realized that she wasn’t even considering the possibility that I might not live to see her child born.

When I was told 6-9 months, my usual optimistic self translated that into a year. But in the back of my mind, especially as I felt worse and worse, I knew that the original prediction could be correct.  By early fall, as things were falling into place, I felt completely at peace spiritually. It became almost an obsession to hang on to see Noah born. While I didn’t expect us to get to know each other, I knew how hard it would be on my daughter if I didn’t get to meet him. This was probably the only time I prayed about wanting to live, wanting to be there for his birth.

Dealing with death is an interesting experience. We all have thoughts about “someday” yet most likely, others were like me and didn’t really dwell on it other than in an abstract way.  Because I was no longer working, and really wasn’t too concerned about earthly problems down the road, I was free to spend the time reflecting and talking to God. While sad for my children, personally, I began to be more curious than anything.

Unlike someone who, in the midst of an otherwise busy life, is diagnosed with a terminal illness such as cancer, my mind was in a place to work on acceptance easier than many.  Watching organs get worse over the years, in the back of my mind, I knew that someday, this would kill me. I wasn’t suddenly struck down by a tumor or some surprise condition.  In my case, I “only” had to deal with death, not a new illness as well. Also, my faith was already an integral part of my life, so wasn’t dealing with this. In many ways, I was fortunate.

Hosparus, our local hospice organization, has a motto, “Because the end of life is part of living.” I believe that became my mantra.  Death isn’t a scary event to fear, but a part of the progression towards eternity. The more I considered this, the more at peace I felt. By late fall, I was really ready to go without regrets.

Then, lo and behold,  I didn't die. It's been 2.5 extra years so far. At first, the “bonus time” was great. That first winter was rough and I felt pretty bad. However, it did give me a chance to get to know Noah and I was grateful. In January, just a week past my "expiration date," I had my first heart attack, followed by pneumonia in February.  But then I quit getting worse. The disease seemed to stabilize.

This current stage, living in limbo, is actually quite  frustrating. I get annoyed at limitations, and then I feel guilty when I consider that I wasn’t even “supposed” to be here! The continuous peace I felt is broken up by frustration and even boredom at times. There hasn’t been a time in my life that I had this much free time, yet unfortunately, I can’t really take advantage of it as I’d like. There are days when I do things. Life has enjoyable moments, especially when grandchildren are present, but there’s also the  knowledge that things could change suddenly. It’s ironic that we could now be surprised by a sudden death, when in reality, we’ve had 3 years warning, and it really won’t be a surprise.