One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Sunday, June 17, 2012

My Body as a Boat

“Just sit right down and hear a tale, a tale of a long lost…”
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.”

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.

                “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.
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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