(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.
