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Editor's
note: The author of this article is a quadriplegic who is
severely dysarthric as a result of multiple sclerosis; she lives
alone at home with the assistance of three helpers. She previously
wrote a successful and interesting newspaper column on disability,
which has been collected into a book (see review page 92). She
was asked to write this article to help physicians understand
how patients feel in such dire circumstances and how our involvement,
or lack thereof, is perceived. -- Vincent J Felitti, MD
"What
is life? It is the flash of a firefly in the night.
It is the breath of a buffalo in the wintertime.
It is the little shadow which runs across
the grass and loses itself in the sunset."
--
Crowfoot, Blackfoot warrior and orator
In
the medical profession, dealing with someone mortally ill leaves
little time for the surrounding medical staff to consider how
the patient feels emotionally, what medical treatment is to be
taken, what family members are experiencing, and the mysticism
and magic involved in healing.
Less
than two months ago, I stopped breathing.
I
live with a chronic condition: Multiple Sclerosis (MS) has been
part of my life for over 15 years. Now in the chronic-progressive
phase, I use a wheelchair. I have always eaten well and avoid
alcohol, cigarettes, and drugs. Other than MS, I have been ill
very little.
What
happened?
I
got pneumonia in the beginning of November. My friends Peter and
Julia were visiting from England and this is their account:
"Our
visit to New Mexico was a great joy for us both as we had not
seen Karen for seven years and we were looking forward to catching
up with news and seeing where she lived. Our visit came just
after the first bout of pneumonia and although Karen seemed
to be better she was in fact valiantly fighting against the
infection. We all longed to be able to talk nonstop and to do
things together but she was not really well enough.However,
we didmanage to have many wonderful chats and laughs, often
in the evening between the shifts of the care staff when we
were 'in charge.'Positioning her inher wheelchair always produced
great giggles due to our incompetence. It was a very emotional
leave-taking; Karen was not well enough to come to the Amtrak
station with us and parting was difficult, as we did not know
when or if we would see each other again."
Though
I felt better, a week after their departure the pneumonia came
back with a vengeance. I had a temperature of 104 degrees. Cold,
wet rags were added to help lower the fever, and the home hospice
nurse gave me morphine to ease the pain. I then told my helper,
Angela, I was sleepy and I wanted to "chill."
This
is where the amazing saga begins. For some reason, I asked Angela,
to sit with me--something I never do--while I rested. It was then
that I stopped breathing due to the respiratory depressive affect
of the morphine. Angelashook me, slapped me, and basically got
me back to breathing, none of which I felt nor remembered.
What
I do recall is her looking at meintensely and saying,"Don't
leave menow!" About that event, Angela says, "Karen
had a bad reaction to the morphine. It was an experience that
I will never forget. I found myself literally fighting for her
consciousness. I felt in my heart that if I gave in to her unconsciousness,
I would lose her."
That
evening, two people stayed with me as I slept in the chair, the
upright position helping me to breathe better. A friend, Paula
Thaidigsman, a retired Nutritional Therapist says the following:
"Angela
and I had agreed it might be safer and less stressful to allow
Karen to spend the night in her chair. For several hours she
slept peacefully while I sat close by, watching her to be sure
that she was still breathing, I found myself struggling with
my own feelings and perceptions. I felt then that it was necessary
for me to let go of any concerns about what the outcome would
be, to just be present to what was happening."
The
next morning, I wokeup really sick, inmuch pain, my chest gurgling
with each breath, my face ghastly white, and blood coming out
of my mouth, possibly due to the large amount of Ibuprofen I was
taking--and it wasn't even Halloween!That morning, I was getting83%
oxygen saturation on my own, andwas given oxygen to ease the struggle.
Then,
more amazing things happened: Unaware of what happened the day
before,but feeling extremely tired, I turned to
Angela, and said, "Callmy family." And proceeded to
go downhill.
Because
of the excessive amount of phlegm, and the severity of my illness,
double pneumoniawas suspected. A stream of people started to come
... and the phone began ringing nonstop. A golden thread that
was part of the tapestry included my physician. Though I had prior
contact with her, it was this event that revealed to me her true
nature. If I had to use one word to describe her, it would be
"grace."
During
this whole episode, my physician dealt with friends, family, assistants.
She exuded calmness, intelligence, compassion, and thoughtfulness.
Part of her approach to healing is teamwork. Decisions were always
reached by consensus. I was never left out of the loop.
I
felt she respected how the situation would play itself out. She
allowed the mysticism and magic to be a part. Without being dominant,
she listened sans judgment, gently made suggestions, and rolled
her sleeves up to do whatever was needed. I did not find out for
three days after I took the morphinewhat had happened ....
Because
the doctor was telling my family that I had a 50/50 chance of
surviving with the proper antibiotics--otherwise it was 20/80--and
because many people were saying good-bye to me at this juncture,
I realized this was no ordinary cold. However, the thought that
I was dying never occurred to me.
I
consider myself a very spiritual person and have reflected on
my feelings of death. I have spent years meditating on the aspect
of letting go. Part of this search has made me a long-time admirer
of Stephen Levine and his partner/wife, Ondrea. (See
sidebar.)
Following
in the footsteps of Elisabeth Kubler-Ross, author of On Death
and Dying, they write in an open and poetic manner about death
and dying issues. As a result, my feelings about death have been
greatly enlightened and comforted by their words. My fear of death
does not exist. And because I have lived such a good life, I hold
dear Stephen Levine's words, "We die as we live."
I
still refused to go to the hospital. Being surrounded by my plants,
animals, and the familiar was a more appealing option. So to paraphrase
Mark Twain, I'm glad the rumor of mydeath was precisely that:
a rumor. Due tofantastic support of friends, family, and doctors,
I am still here. I felt surrounded and very cradled by love. After
finishing all the drugs, I was quite unprepared for my emotional
fallout, a common phenomenon that occurs frequently among patients
that have survived a medical crisis. Though I experienced a great
deal of amnesia during the crisis, I truly realized just how close
to death I had been and was reeling from that as well. The fear
of death did not bother me, but the flurry involving the details
of my final affairs overwhelmed me. In brief, this experience
was an excellent dress rehearsal.
I
am now taking probiotics, acidophilus, and other good stuff like
protein powder drinks--I am trying my best to gain weight and
rest a lot. A select few have received a phone call from me. Mark
Twain said, "Be good, and you will be lonely." I am
not lonely, but I am being good and avoiding crowds.
As
a professional photographer in my earlier days, two images used
as wallpaper on my computer came to mind during this crisis. The
first image I posted shortly after my initial bout with pneumonia.
Though this photograph was taken in broad daylight, the overall
hue was dark, albeit colorful. As a close-up, the image involved
a small creek deep in the woods. Taken in Oregon during the autumn,
the creek was surrounded by moss-covered rocks, dotted with brilliant,
fallen leaves. It is an introspective image. The second image,
posted during the recovery days, reveals how my health was lifting.
Taken from an airplane, the photograph of snow-covered mountaintops
radiating in the early morning sunlight included a very blue sky.
What a place.
When
looking at this image, I cannot help thinking about Edna St Vincent
Millay's poem, God's World:
O
world, I cannot hold thee close enough!
Thy winds, thy wide grey skies!
Thy mists, that roll and rise!
Thy woods, this autumn day, that ache and sag
And all but cry with colour! That gaunt crag
To crush! To lift the lean of that black bluff!
World, World, I cannot get thee close enough!
It
is now five and a half months later. I am full of "piss and
vinegar." Having faced death so closely, I have had the opportunity
to test any residue of fear. It does not exist.
Vietnamese
Buddhist monk, Thich Nhat Hanh, aptly describes very well my life
as of present, "You become aware of the fact you are alive.
You are still alive and you are walking on this beautiful planet
... The greatest of all miracles is to be alive."
Stephen
and Ondrea Levine Reading List
- Living
Into Life and Death
-
A Year To Live: How to Live this Year as If It Were Your Last
-
Who Dies? An Investigation of Conscious Living and Conscious
Dying
-
Unattended Sorrow: Recovering from Loss and Reviving the Heart
-
A Gradual Awakening
-
Guided Meditation
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