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Doris's Letter to Porphyria
DEAR JOHN: For therapy, a caring doctor had recommended I write about
my illness, that I state what it has done to me and how it has
affected my life and finally, what I hope will happen no matter
how unrealistic. Since it took a better part of my lifetime
to unravel the mysterious maladies that plagued me most of my
life, it was difficult to write about it in a less compassionate
form. It is important to understand when you read this
that it is possible to have been born with more than one congenital
anomaly. In my case, I was born with a mild Arnold Chiari
Malformation which accounts for an inability to nurse, dizziness
and clumsiness in infancy and adolescence. Porphyria symptoms
were not present until my early to mid-teens.
I am sorry to inform you that I have never loved you. I
have truly never understood you and even worse, no one else has
understood you either! Starting from my earliest memories
you have caused confusion and misunderstanding. You caused
my parents to believe I was ill mannered at the table. Because
of this I spent unspeakably cruel hours sitting at the dinner
table being disciplined, eating my own regurgitated food, uncountable
hours of stomach upsets, pain and tears. My mother always
believed I personally rejected her since I couldn't nurse, and
believed I rejected her excellent cooking efforts from the beginning
of my existence. By the time I was 10, I was labeled a hypochondriac
and clumsy. All this due to my dizziness, chronic mild
aches and pains and chronic cramping constipation. My complaints
were stonewalled. I learned to bury you. Anything
was possible. I could fight you. You and my parents
made me strong, the physical pain from life's normal upsets meant
nothing to me. I concentrated on being the best at school, my
uncontrollable mood swings hampered my social life until I conquered
that too.
Occasionally throughout my adult life you would dig
yourself out of your grave and I would be desperate enough to
seek out Dr. Exorcist only to relive the cycle of my youth. Sometimes
he would refer me to Mack the Knife, Dr. Pill Happy and Dr. Nightmare. Most
of the time this proved to be a bad choice. But, this was
back when I didn't realize I had a choice. I was naive enough
to believe exorcism always worked and to not obey Dr. Pill Happy
was unthinkable.
You taught me to dance between the rain drops. I
concentrated on family, college, and a successful career. Once
I passed 40, the rain storm started becoming more constant, the
space between the drops became smaller and smaller. Until
I reached the day when my plodding dance steps were so limited
that my family could take it no longer and forcibly placed me in
a wheelchair. I
learned what it was like to be short and invisible. I had limited
cognizance, would blank out (grand mall siezures), lose my balance,
get severe flu like symptoms, severe back, shoulder, neck and all
over pain and migraines, and the list goes on. I lost
my business, some friends, and hold on loving life. I learned
what it was like to truly wish for death. I became desperate
and even more desperate while the Dr. Mack's argued over the semantics
of my illness. This is where I learned that you and I had
been together since birth. What a wonderful feeling to have
been vindicated and to have been healed! Dr. Mack could be
a good guy after all.
I cut you out of my life, but experienced the most devastating
blow to discover a month after Dr. Mack's handiwork, while having
a wellness celebration or farewell BBQ party about you, that you
had an evil twin (according to an unsurprised Dr. Mack the Knife),
yet to be named. Fortunately your twin
is not identical, but is definitely a Gemini, unpredictable. He's
thought to be a rarity.
I can remember the feeling of morning. A bright new day,
the delicate warmth of sunshine bathing my face, the sound of birds
chirping, a smell and feel of morning air through the crack in
the window, the feeling of warmth and strength flowing through
my body, the excitement of a whole day ahead of me to attack and
enjoy life. It seems like only yesterday that I would take
my nature walks with friends, challenging ourselves to exceedingly
longer and longer jog-walks each day. Building a sand castle at
the beach, standing in the sun watching a parade, going outdoors
on a hot sunny day, an outdoor BBQ, going to a day game at the
stadium, walking my dog around the block, wandering through the
grocery store taking goods off the shelf, standing at the stove
long enough to cook something, taking a long drive, playing chase
with my little dog, the satisfaction of scrubbing a dirty rental
house clean, cleaning my own house, gardening, working as I choose,
doing all these things I took for granted would last my lifetime.
The excitement of seeing snow on the mountains and planning a ski
trip still haunts me. I will never do that again is my slogan
for today. Focusing on what I can do is my personal challenge.
Now
if I have slept, I wake to the feeling of burning pain everywhere
I can feel my body. If I concentrate very hard I can hear a bird
chirp over the loud ringing in my head, my nose is too plugged
to smell my own bad breath let alone the morning breeze, and if
I roll carefully off the bed I may not feel a jolt of excruciating
back or leg pain. If I awake with any energy
it is a blessing I savour for the few hours it may last. Sometimes
I truly dread a walk from here to there. The gentle warmth of the
sun has become a seering pain to me that evokes a headache, nausea,
stomach pain, and more. I am almost always hot and have flashes
burning up all day and night. Feeling cold is a blessing. The heat
from the sun can trigger such a violent reaction that even the
vision in my right eyes spasms and fails. I live with constant
pain, fear of eating the wrong thing, hoping I will be able to
sleep when the time comes and counting the physical things I can
no longer do as a regrettably growing list. Out of the blue my
heart will thump, bump and race for what seems an eternity. The
head ringing often becomes loudly unbearable. I have learned to
surround myself with noise to keep from going mad. Even worse is
the unwanted knowledge about my body that keeps flowing in. I spent
a lifetime bearing you and burying you. I spent 20 years trying
to find out why these things are happening and now the why's won't
stop. The list of diagnoses and pills/things I am allergic too
is too long for me to remember. I usually just list the highlights
on medical forms. You make me feel like a freak of nature.
Dear John, the evil twin, I want you to move out. I
want to hear silence, I want to walk my dog in the sun and build
a sand castle at the beach with my granddaughter. I want
to hop out of bed and go grocery shopping unassisted. I want to
learn to love the things I have learned to hate because of you. I
want to go dancing in the evening and clean my house during the
day. I want to walk ten miles on a summer day. I want
to be able to eat like anyone else and not have pain, gain weight
or get sick. I want to be able to toast the New Year. I
don't care about my career, it is gone along with my total naivity
about humanity. Most of all, I never want to have to see
your friends, Dr. Exorcist, Dr. Pill Happy, Dr. Nightmare and Dr.
Mack the Knife again as long as I live. I want to feel
the morning!
Me
P.S: John, I have often been asked to write about you
and to attempt this had caused me to be unbearable to live with
for days, but a Dear John letter was a very pleasant task.
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