Monday, July 28, 2008

A Susan Health Update

It’s time for an update on Susan’s physical, emotional, and spiritual health. Some of what I tell you is brutally honest, but she wants people to know these things and has asked me to be frank. It turns out that the process of dying is more complicated than we imagined. She is not bed-ridden or home-bound. She has no tubes or needles entering or exiting her body. In most ways, you wouldn’t know this person is dying, let alone in a hospice situation. But the reality is that she is slowly declining both physically and emotionally. The good news is that her spiritual health has probably never been better.

Physically, she has the tell-tale “moon face” (which she hates) of someone who has been on steroids for a while and she uses a cane or walker outside the house. But beyond those minor observations, you might not realize all the other things that are going on. She does her hair and nails. She wears jewelry. She is as impressively well-dressed as ever. On any given day, she’ll have periods when she feels well and enjoys knitting, reading, or listening to a book. But she’ll also have periods of fatigue or discomfort. Afternoon naps have become an important way to conserve or renew her energy. She has to limit the number of things and people on her daily agenda (very hard for her). Too much to think about saps the energy right out of her. Issues with fine motor skills have affected her hand-writing and the handling of small objects (like pills). She has neuropathies in her feet that come and go but are coming and going a little more often. Balance and mobility have decreased (thus the cane or the walker) and her left foot won’t cooperate when she walks. She is mostly pain-free (due to regular baseline pain management) but occasionally has severe upper abdominal pain that requires additional narcotic intervention or scalp pain near where the pins of her gamma knife “helmet” were attached. Some time ago, her colon stopped working normally and finding and maintaining the right balance of substances to prevent great discomfort from either unwanted extreme remains elusive. She lost most of her ability to salivate and some of her taste from earlier radiation treatments. Combine all of that with short-term memory loss and occasional confusion and you’ll get an idea of what things are like for her on an on-going basis.

Emotional health is also a struggle. The prednisone is partly to blame because not only does it produce the despised “moon face” and weight gain, it also sets the stage for an emotional roller coaster that can find her angry and grumpy one minute and crying the next. For those who know Susan well, you know that she has always been a self-directed, “in-control” achiever. To lose so many physical abilities and to let go of things she can no longer manage is extraordinarily difficult for her. Jon or I need to be with her when she takes her meds to explain why this or that has changed, to help make sure she’s taking the correct day’s doses, to find the ones she drops, or to just keep her focused on the task. She hasn’t driven since late April or early May. During the periods when she is feeling reasonably well, it drives her nuts to be dependent on others (primarily Jon and me) for transportation. At other times, she realizes why things are the way they are. But for this highly intelligent, capable, accomplished person – it sucks. In addition to the fatigue, over-stimulation causes anxiety. That’s why you rarely see her in large group situations any more. She likes occasional short intimate gatherings although they are taxing.

But just as she has declined in physical and emotional strength, her spirituality has grown with this experience. Everything that is happening to her is supposed to be happening in this process – and she knows it. While so many others among us are avoiding the subject of dying and death or resisting it in angry denial, Susan is facing the end of her life with firm resolve to leave the rest of us more enlightened for the experience and to leave a legacy for the grandchildren she’ll never meet. She has a quiet confidence that her life has been meaningful and she looks forward to discovering how it will continue in some way beyond her earthly existence. When we gather at Montview for her memorial service, we will have no trouble acknowledging our grief, but we will be equally passionate about celebrating her life. She will have shown us a way to live and a way to die that will enrich our own journeys in life and in death. Anyone who spends time with her can easily acknowledge the sadness of her physical and emotional decline. But one can also discern - just beneath the surface of the obvious symptoms – another deeper, ultimately more important reality about our existence. We have to look past the sad stuff to experience it but it’s there. It’s uplifting and inspiring and it calls upon us to grow our own spiritual awareness.

So in that all-important sense, I’m happy to report that Susan is well.


Anonymous said...

That was lovely, Rob. You really write well and I appreciate your candor. How appropriate that I commented on Susan's spirituality just last week in my last email to her. It is very evident to me. It is also happening to you. Perhaps when people see you as being 'brave', what they are actually seeing is the inner peace that surrounds both of you. Love you! - Barb

Colette said...


Thanks to Rob for his eloquent candor. Sorry I could not respond in
the blog itself. I messed up my password, and I'll have to start
over--next time. I had a nice response to contribute, but I let it go
without copying it.

Also, Thanks for putting up Patrick's photos. They are so
wonderful: nature in its infinite greatness! He's bringing the
inspiration of this Creation home to you, and to us. The rockpile
to the the great sky reflected in the glassy lake. What depth of
vision he's getting. (with a capital V)