“Just sit right down and hear a
tale, a tale of a long lost…”
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| Photo by Adam Tinworth |
Describing to able-bodied people
what a debilitating illness does to a person’s soul and how it impacts everyday
life is difficult at best. Most, who see me find the fact that I even park in a
handicapped space bizarre, just like I used to down when I saw seemingly able
bodied humans climb down from their trucks after parking in a handicapped zone.
Last night, however, I took a three
hour tour with a strange crew and the analogy between what it is like to be
unable to really enjoy life’s simple adventures was too poignant to pass up
writing about.
I often have these dreams with a
very jovial man with a red beard. He always likes to party. I have met him in
several dreams throughout my life and without fail we have meet in a bar, pub
or some kick ass party where drinks flowed and girls were clad for flirting and
more. When I meet him, he is always standoffish and we have nothing to say to
each other. Last night, he invited me upon his ship.
To say it was a ship is to exaggerate,
just don’t let him here me tell you so. It was a boat made completely of wood.
We boarded, my husband and I, in clothing
that indicated we had just come from a party or a wedding and sat in the
control room that was sparsely appointed to discuss our trip. We had a first
mate, whose dark hair and dark eyes were in stark contrast to the red bearded
captain.
“Who brought the hash?” he asked,
as if that was the most important issue for our upcoming voyage.
As was his custom, the Redbeard
said nothing but turned to me and stared. My husband always uncomfortable with the
spot light shinning upon the shortcomings of our life squirmed beside me, so I
dove right in.
“Look,” I said diplomatically, “We
don’t do drugs and I don’t drink, period. I have this life threatening battle I
am waging and I don’t want to do anything that would interfere with all the
drugs in my system. So I just don’t do that stuff. However, we don’t care what
you choose to do. That is totally up to you. I can always leave the room or
whatever, so you can party.”
Redbeard seemed amused by this statement,
and we set off. I rode in my inappropriate clothes in front of the wheel house
and was amazed by how fast the more than stellar boat could go. It would speed
along this river of glass that we were navigating and there were no waves to
fight and no turbulence to be met. The wind was calm and the feeling exhilarating.
Somehow the four men of our crew
decide that on this the first night, after docking at our first location, I
would take watch at the wheel house and they would go to the living quarters to
play poker. To be honest with you, I have no clue if my husband even would go
play poker with a bunch of men, but, hey! In my dream he was thrilled to do so.
I stood in the wheel house content
to watch the night and the water. The moon playing off the glass like surface of
the river, the occasional water bound jumping up out of the water to capture
some prey I couldn’t see. There were the frogs hidden in the reeds, birds chirping
as if singing a lullaby to their young laid to rest under the silver light and
I could make out a head of a river turtle pop out of the river to make ripples
and waves like some very slow game of Whack a Mole. Only I wasn’t whacking. I was at peace.
Suddenly other women, who were set
to watch the wheel house while the men celebrated the coming voyage, were
running to the dock master to settle the account. If we didn’t get out by a
certain time, we would be charged a penalty. Now I can do many things but
navigating river waters in this magnificently barren and a bit decrypted boat
was not one of them.
I grabbed a check book to pay to
stay longer in the safety of the harbor, when Redbeard made a sudden
appearance. In his typically jovial and nonchalant attitude, he grabbed the
check book from me to settle with the harbor master and then set about single
handedly preparing the boat to take off.
“You were right,” he grumbled good
naturedly, “We shouldn’t have had that last keg. You man is passed out below.
Why don’t you change and go see to him.”
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Photo by John Wernham |
As the boat began to make journey
again, swaying slightly to and fro. I found my way to the privy, no, literally
the door said “Privy.” I guess in my
make believe ship the word bathroom was too crass.
I got out of my party dress and
into jeans and a warm sweater and went to find my husband who was sprawled out
next to an open window so he could easily eject his partying when the need
struck. Also in the room was another woman. She was dark haired and dark eyed.
Her lithe body was easily sixty pounds lighter than my own and she groaned occasionally
as if she were fighting the party induced stupor she was in, trying to rise to
consciousness.
Dutifully, my husband, rose up and
said that if I brought him new clothes, he would get up and pull his share on
this sudden three hour tour, turned party boat, turned un-named adventure. I
also needed my luggage, the other things that helped my life run. I went to the
captain who found a make shift dock and drew our boat into with ease. He tells
us that all he needs to know is what hole we put our luggage and he will get it
for us and we could be under way again. He asks for my help because I am the
only one who is dressed and not hung over.
I gingerly climb down from the
upper deck onto the slick and rotting wood of the side area. Redbeard begins to
look for compartment U as instructed by my husband and I follow Redbeard around
waiting to be of help. Just as he begins to pull open the wooden door
concealing the compartment, large rotting parts of the boat begin to fall
apart. It is nothing that will sink the ship but obviously we can’t move on
with these large chunks missing from our boat.
The first mate, who has been absent
since right after asking for hash, comes out on the upper deck and says, “Ahhh
man! Is that the main mast? You know we can’t get out of here without the main
mast!!!! Do you know how long we are going to be sitting here waiting for
someone to come along and then waiting for them to bring back the right parts
and then actually putting the parts on. Dammit! We might as well have not set
off to begin with!”
As I begin to lucid dream, I take
in the scene before me from the practiced eye of someone used to studying and
stopping her own dreams. Redbeard is carefully pulling off the rotten boards
and he begins to calm the First Mate saying, “Now boy! Sometimes these things
break down and you have to take them apart to put them back. We can have a fine
time here next to this magnificent swamp….”
His voice continues as the rotten
board I am standing on, an extension of the vessel meant for jumping off of or
going diving from, begins to sink into the water and then I suddenly
understand. My body is the boat.
With this realization, I wake with
a migraine, something that is happening with regularly frequency in my life. I
groan from waking to the sudden pain and my entire body protests as I slip out
of bed, grab my cell phone and put on my PJ bottoms to hobble into the living
room where the family computer sits.
Whether the chronically ill are
fighting a life threatening disorder like MS or, like me, are suffering from
autoimmune autonomic failure, the frustration of the First Mate is all too familiar.
I have a life to live. I have
things to do and I am docked in what would barely pass for a safe harbor
watching the Captain of my life dismantle my body parts as they slowly rot off
my own body. Not even the platform where I used to jump into the water with
great abandon is safe to stand upon anymore. The fun is gone, rotted away as if
the timber had never been treated for regular wear and tear much less simple
cruises on a river.
You have to want to shake the
Captain and ask him why he didn’t build me a better boat? He knew I would be
exposed to the weather and battered by storms, so what about me caused him to
over look the crucial point of weather treating my timber?
He, however, has given his answer, “Sometimes….
you have to take them apart to put them back.” My life, perhaps, was filled
with more than your average storms. It is a true statement to say that my life
and my body have taken what would be the equivalent of a Katrina or category five
tornado. My life as a child was a tsunami crashing upon my body, my spirit, my
mind on a regular basis. This was bound to take a toll on my body. Being raised
by a rapist who was supported by a family in denial, lead me to have venereal
diseases I didn’t ask for or want. It leads to a mental break down at eighteen.
On top of that, I had a congenital heart defect that was never treated or
diagnosed until I got pregnant with my son, an act that brought my life
terminal joy and damaged my heart and circulatory system to nearly beyond repair.
Further I suffered early in my life from strange auto immune issues that were
not treated properly by the persons charged with my care. My medical history is
a bizarre joke that as I tell most medical professionals leaves them literally
picking up their jaw off of the floor or looking at me as if I am completely
insane, until they run some tests and verify that I am indeed, not a liar.
So maybe the Captain did weather
treat my timbers and I have just suffered so much that being well right now is
simply beyond my boats ability. I am being taken apart so that I can be put
back together.
Redbeard even tells me what to do
in the mean time….live in the moment and the place I am in with joy. This swamp
land I am surrounded by is teaming with life to watch. My husband is with me
and I have many first mates who may want to smoke some hash but refrain and
drink wine instead just so I can join the party. Some even start parties
earlier just so I can partake before my body invariable objects and I am forced
to go home.
More importantly to me in this
dream, is the un-named beauty in the hull. Her dark hair and eyes are familiar
to me because she is me. That fun loving, loud person with limitless energy and
excitement about life and adventure is there and trying to rise out of
unconsciousness to join in the journey again. She is perhaps the most important
part of this dream for me. Because SHE IS NOT GONE!
In less
than two weeks I travel to Vanderbilt University and Hospital to undergo
specialized testing and evaluation by a team of doctors. This journey should truly
begin to take apart my rotted body and begin to build it back again. These are
the specialist in the field of study under which I fall and they , more than
any other doctor I have seen can diagnose and prescribe the life changes and
medication changes that need to be made in order to get my vessel going again
and wake the sleeping bit of vibrant universe unconscious in my hull.
More
than that, however, last night I celebrated Father’s Day with my husband and
fourteen year old. My husband is always wanting to DO something and with my
illness our “something’s” are often truncated or carefully planned to bring the
least amount of stress to my body. Yesterday, I was feeling vibrant and
suggested a baseball game. There was a time when you could find us at baseball
games often. Always minor league games where they make inappropriate noises
from the house sound system at the opposing team and people dressed in
outrageous costumes throw cheap T-shirts into the stand at crowds of people
begging and pleading for one.
Last
night, I insisted the day be about my husband, TC, so we bought tickets behind
the home team dug out. I hadn’t considered the long flight of stairs that would
lead to the seats or the fact that our section would be in direct sunlight when
we got there. I just wanted TC to have fun again. To not worry about me, to
spend money on himself in the Game Shop, to drink a beer, to relax and for a
few hours not worry about taking care of my dilapidated boat/body. I wanted to
give to him this Father’s Day what he is always giving to me. When I insisted
we by the box seats, TC oringinally baulked at the money, “Why,” I asked, “Do
you not hesitated to over spend for my birthday or Mother’s Day, but you can’t
let us do the same for you?”
“We
will have to be frugal if we do this,” he replies.
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| ME. |
“You
aren’t worth frugal?” I counter.
“But I
love you more than I love me,” he says in a small voice that trails off and I
know what he doesn’t say. I am the one that is sick and he only wants to ease
my living with this chronic illnesses come pain.
“I love
you more than I love me,” I counter, “And we,” gesturing between my son and I, “We
want to love you more today.”
So we
talked him into it. Box seats at the baseball game, two beers, peanuts and
cracker jacks, a new hat and a very long day that included a cheap meal at
Steak N Shake, cause we had to save money somewhere.
We gave
him his gifts and cards and we got free rally towels at the game. I spent the
entire day trying to pretend I was normal.
I ate
cotton candy (I don’t need you to chide me!). I drank as many bottles of water
as I could in good conscious ask TC to buy me. My son shared one of his hotdogs
with me and I shared my soft pretzel
with both of them. We bantered with the
umpires who really couldn’t see or officiate and yelled and clapped.
Finally,
I needed to make the long trek up to the bathrooms and TC joined me as physical
support. I thank the Captain I didn’t pass out when we made it to the top, although,
we still attracted unwanted attention from security. TC managed to convince
them that I didn’t need medical intervention and I was able to go to the bathroom
and walk around in cooler air for a few minutes. I talked TC into a frozen lemonade which brought down my core temperature
and I seemed better when I got back to our seats once again.
I had
to agree to quit yelling and standing up and dancing or screaming for a ball or
cheap T-Shirt. As the night wore on, I knew the inevitable was happening,
Father’s Day was no longer about my gorgeous, wonderful mate, it was quickly becoming
about how fast could we leave and get me back into bed to recover.
At the
bottom of the 8th, with the home team down three to one, TC gently
and firmly gathered our things and told my son, upon whose shoulder I had taken
as a pillow that we were leaving. I was too tired to protest.
We
picked our way through the crowds and the discarded peanut shells and beer cans
to find our way back to the car and make a hasty retreat without being stopped
by the crowds. My concentration was completely on not passing out before we got
home. Something I was able to accomplish.
Then I
dreamed about my body as a boat, a voyage that lead to a rotting ship falling
apart, a sleeping maid and a red bearded Captain who haunts my dreams
regularly. And I woke to aching joints, back, head but mostly an aching heart
that I couldn’t give one day of fun to a man who spends hours making sure my
boat doesn’t sink before we can find a way to replace all that has been broken.
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| I couldn't resist adding this for TC. |
Lydia M N Crabtree suffers primarily from AutonomicAutoimmune Dysfunction. This rare disorder affects all immune functions making
her easily susceptible to illness, currently she is battling Lyme Disease,
parvo and a series of other common viruses and illnesses that normally do not
affect others. Additionally her condition impacts all automatic functions of
the body like, the regulation of body temperature, heart rate, blood pressure
and blood circulation. Being in direct sunlight will raise her body temperature
and there will be no physical indications that she is headed for heat stroke.
Walking up long stairs causes her blood pressure to fluctuate wildly leaving
her susceptible to passing out. The parts of the body that regulate circulation
and swelling of the body often go hay wire causing her hands and feet to swell
and her joints to be painful. This causes back pain and joint pain in most
major and minor joints. She regularly
gains and looses ten lbs. And when you see her with make up on and walking
slowly by her husband, you would never guess in a million years how very ill
she is. This disorder is genetic in nature and often brought on by extreme
stress. Given Lydia’s history of a biological father who was a pedophile and
rapist and family who support his physical, emotional, sexual and mental abuse,
Lydia was a prime candidate for developing this illness.
For More Information on Autonomic Autoimmune Dsyfunction:
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