Archive for 2012

Write for Arthrogryposis!

Write for Arthrogryposis!
Posted by Jessica Jewett No Comments »

Okay, loyal readers, I’m putting out a call for help.

As you know, I have a rare and difficult congenital condition known as Arthrogryposis Multiplex Congenita. Every year, there is a conference for parents with children who have this condition as well as adults with it. I have never attended the conference, but I was told that a doctor in attendance, Dr. Hall, called on everyone to begin a letter writing campaign to Congress and the Senate encouraging approval of federal and state funding for research and development of standard medical treatment.

You see, Arthrogryposis is a condition that has virtually no notoriety, no proper research, no celebrity patron, no nothing on a standardized level. Why, you may ask, is it important for there to be funding for research? For starters, Arthrogryposis Multiplex Congenita (AMC) means multiple joint contractures present at birth. A joint contacture is a joint that lacks normal range of motion, or in other words, is stiff and/or curved. More than 3 joints have to affected in 2 areas of the body to have a diagnosis of AMC. Approximately 30% of newborns with Arthrogryposis will die within the first few months of life because they have a lethal form of the condition that causes nervous system dysfunction. There are roughly 400 types of Arthrogryposis, and 1/3 of those cases are classified as Amyoplasia Arthrogryposis, which is non-genetic and nobody has a clue of what causes it or why.

In other words, it’s absolutely inexcusable that there hasn’t been enough proper research to at least develop a better medical treatment system than the experimentation we all went through as children. I was born about five years before any doctors remotely knew what to do, which meant that I was shipped to different hospitals in different states looking for somebody who could help. I don’t even know which type of Arthrogryposis I have. I’ve had roughly 18 surgeries beginning before my first birthday. Most were deemed as, “Well, this might work but we don’t know.” Many of my surgeries had no affect on the quality of my life whatsoever. Many were brand new in my generation and have now become standard “we’ll try it” surgeries for everyone younger than me. Doctors who were faced with treating Arthrogryposis in my generation and the generations before me are true cowboys of medicine because they had to take risks to try and help us. Their work has largely been ignored by the world because Arthrogryposis, like so many other rare congenital conditions, has no celebrity patron. We have no one fashionable to be our spokesperson, so we have to be our own spokespeople.

There is no cure for Arthrogryposis. There is only treatment to reduce the severity of the joint contractures and increase muscle strength to maximize the function level of the individual. Treatment often includes stretching the joints multiple times per day, serial casting, physical, occupational and speech therapy, splinting, bracing, tendon releases and lengthening, osteotomies (bone cuts), and external fixators. All of these things are extremely painful (speaking from personal experience). The fact that we keep putting ourselves through these treatments knowing there is no cure but only a hope to make life bearable is also quite mentally painful. I’m 30-years-old and I’m still facing major surgery. The contractures in my feet have reverted to the way they were before the first time they were reconstructed. It involves releasing tendons, breaking bones and re-positioning them. I will be facing 3-6 months of recovery once they decide to go ahead with it. This is just a glimpse at one surgery. Now picture going through it 18 times on different parts of your body.

Do you see why we need funding for better research and development of medical treatment?

I’m asking you, along with Dr. Hall, to help us bring attention to our legislative bodies. Email is not good enough. One tangible paper letter is equal to dozens of emails. You can look up your local state representatives here: http://capwiz.com/yo-demo/dbq/officials/ and when you find their addresses, send letters. Please commit to sending your letters between now and December 15, 2012, to make a concentrated impact. It helps if you talk about people you know with the condition, the way they’ve struggled to find proper medical treatment, what further funding would do to improve their quality of life, etc. If you don’t know anyone with Arthrogryposis besides me, I give you permission to reference me and use my picture. The point is to make the government understand that a 30% infant mortality rate is unacceptable, and so too is it unacceptable that there are virtually no medical studies to identify the cause of this condition, as well as long-term studies on treatment success.

Specific areas of research that we need you to mention in your letters include finding the cause of Amyoplasia (the sporadic type that nobody understands), mapping the genes in genetic types, and long-term outcome studies need to be done for common surgical procedures in this diagnosis. I also want to push for research in women’s medicine associated with Arthrogryposis. Roughly half of my doctors tell me I can have children like other women. Half laugh at me when I ask. Other women with Arthrogryposis are generally left in the dark as far as women’s health and sexual health. We’re all left to decide on the risk of pregnancy with very little information on the success or failure of it.

Please, please feel to contact me if you want help writing your letter. I will post my own letter as an example as soon as I write it.

Helpful links:

No idea where to start in writing a letter to your congressmen?! Start here: www.tiny.cc/writeforamc

Put fact sheets like these in your letters.

General Arthrogryposis fact sheet: www.tiny.cc/amcawareness
Amyoplasia Amyoplasia fact sheet: www.tiny.cc/amyoplasia

If you choose to write your state representatives on behalf of those of us with Arthrogryposis, I personally thank you from the bottom of my heart. Again, please feel free to contact me if you need help.

Read More

Short Story: “Honeysuckle”

Short Story: "Honeysuckle"
Posted by Jessica Jewett 2 Comments »

Honeysuckle
by Jessica Jewett
© 2012 

Granny always said a house was a keeper of secrets, and Amy hated that old house the minute she took the tour guide job for extra money during summer break. Three weeks into it, she seriously considered walking away. They didn’t know! How could they? No one else wanted to close up at night. The historical society suits always sacrificed on the altar of escaping before dark.

“Night, Amy!” shouted the new girl as she swung her purse over her shoulder and bolted for the door. Even the new girl understood.

With the latch of the front door, isolation pressed on her as if nothing else existed. She wondered, as she turned off display lights, how such a cavernous 19th century house could feel so claustrophobic. A fleeting thought of being trapped in the darkness of a coffin jolted her so violently that she dropped a feather duster.

“Shit,” she cursed under her breath.

Clearly, the house wasted no time with despotic control. She rushed through sweeping, washing fingerprints off windows and display cases, and climbed a rather overly theatrical curved staircase to the second floor. Really, the architectural drama in those old-fashioned houses amused her. She couldn’t envision a family laughing with each other in such melodramatic surroundings. Whenever she thought of that old family, they looked like a sad painting in a museum. She gave herself over to those mindless ideas to combat the domination of that damned house.

Amy rushed so thoroughly that she nearly missed a series of crayon marks on the floor in the second bedroom. It had been the nursery in its day and people often left their kids there so they could enjoy the tour without distraction, but kids constantly left damage. Irritated, she crouched with a bottle of floor cleaner and a rag. Even if the house was melodramatic, that didn’t mean little brats should be left to ruin original floorboards!

Irrational, overpowering waves of rage spread through her veins with every heartbeat. Somewhere a shadow of rationality peeked from the back of her mind but a new wave of rage obliterated it. Crayon marks long since disappeared but she couldn’t stop herself from scrubbing harder and rubbing her fingers raw with cleaning solution. Stop, her thoughts screamed. Stop! But she couldn’t. It always happened that way. Every bit of damage to the house pushed her into depths of fury.

Only the whiff of sweetness broke the moment. Floral air rolled past her nose, pulling her away from the oppression. She awoke, blankly peering at her hands. The palpable awareness of her quickening heart brought sweat to the surface of her skin. The perfume hung in the air, even bringing the pungent cleaning solution into submission.

“Hello?”

Amy laughed at herself and dropped the rag. She reprimanded herself for letting her fear get the best of her. Five groups of school field trips were enough to make anyone a little insane by the end of the day.

Still, the aroma of honeysuckle hung in the air.

Fresh air awaited her on the hallway balcony. She flipped off the light but immediate regret stabbed her. She should have left but a creaking floorboard begged for attention. If she had been in her right mind, the cliché development would have been funny, but she turned to face the interior of the room with foreboding.

Blue-gray shadows undulated and lifted from the floor like a water fountain coming to life. The cloud blocked light from the window. A head formed, then shoulders, a waist, and finally, a billowing skirt faded into the invisible world from where it came. Muted color bled into the feminine figure and Amy recognized the dress from a century past. The honeysuckle perfume became so overpowering that she feared she might suffocate. Everything in her body told her to run.

“Do not walk away from your duty! Finish what you started!” The voice filled the nursery as demanding as it was angry but the elegant woman’s mouth never moved.

Amy’s eyes narrowed. Offense at being ordered around like a housemaid actually overrode her fear. “You don’t live here anymore!”

The figure morphed from an elegant lady to a creature Amy couldn’t identify. The face melted into an elongated, grotesque version of itself and the mouth went so black that she feared it would reveal the doorway to hell. Her eyes darkened and as she floated closer, Amy found her legs again. She ran. She stumbled on the stairs and flung herself out of the front door.

Poor Amy never set foot in that house again, nor did she make fun of the melodramatic oil painting of a family that lived in that house a century ago.

Read More

Do ghost tours harm the paranormal field?

Do ghost tours harm the paranormal field?
Posted by Jessica Jewett 12 Comments »

Original post on June 16, 2011.

A few years ago when I went to Gettysburg for the first time, I saw a folding board advertisement outside of an old house on Steinwehr Avenue spouting Gettysburg Ghost Tours. I had heard of ghost tours before but I had never seen such a thing in person. At the time, I remember that it struck me as odd because the building had Halloween decorations all over it and the whole thing seemed cheap and exploitative to me. Someone told me there were other tours on Baltimore Street that were operated by Mark Nesbitt, a former Gettysburg National Park ranger turned author of the Ghosts of Gettysburg books. I think there are twelve of those books in the series now. I have always had mixed feelings about Mark Nesbitt and what these books and tours represent but I was on my way to somewhere on Baltimore Street that afternoon. I soon forgot about the Gettysburg Ghost Tours.

Late that night, my friends and I were walking to a Civil War reenactment ball and we happened upon one of these ghost tours in progress. Costumed interpreters lead groups of tourists by lantern on walking tours talking about all of the hauntings and apparitions along the way. Of course, it’s all for a fee. I watched it for a minute while the tourists watched me too (it’s kind of hard to miss me in a Civil War ballgown). Something about these tours really rubbed me the wrong way and I left not long afterward. There was an element of a circus freak show to it.

Step right up, folks! Pay a few dollars and see the ghost of a dead soldier!

I don’t know. Maybe I was a little too overprotective of the thousands of spirits still lingering around Gettysburg and I was being too cynical. I do understand that most of Gettysburg’s local economy is based on tourism and television shows describing the ghost stories have really piqued the interest of people everywhere. It’s natural that people with an entrepreneurial spirit would find ways to cash in on that public interest. I just chalked it up to the nature of the tourism beast and let it go.

Since that initial introduction to ghost tours, however, I have watched them spread all over the world like a plague. It’s gotten so out of hand that I can’t seem to look at ghost stories in any city online without sorting through dozens of advertisements for this or that ghost tour, all claiming to be the best in that city. In fact, the straw that broke this blogger’s back was trying to look for notoriously haunted places in Boston since my readers like the research but all I found were pages and pages of different ghost tours in the city. It has become a full-fledged commercial machine. Anyone with a centralized historical location can throw a shingle on their door, buy a lantern and offer tourists ghost tours of their area. People eat this stuff up like candy. I’m seeing it everywhere I go when I travel as time passes.

Step right up, folks, indeed.

It all seems very harmless, but from my vantage as a medium, I can’t help but wonder why people are missing the fact that it is all completely exploitative of the spirits that are the subjects of these tours. Once a person dies, they almost cease to be human. They lose value as something to be honored, respected and protected. There is indeed an element of a zoo exhibit or a circus freak show about the way the living treat the dead. Sometimes I want to say, “Would you be happy with people paying a tour guide in hopes of seeing the ghost of your mother, father, or grandparents?” I’m guessing most of the time the answer would be a resounding no. What is the difference between the recently dead and, say, a soldier that has been dead since 1863? Has that soldier lost enough humanity that it makes it acceptable to go on a tour hoping for the thrill of seeing his spooky apparition? These questions bother me quite a bit. In my case, I find it intolerable that people try to lure out my former husband, Joshua Lawrence Chamberlain, in Gettysburg like he’s a dog performing tricks to give ghost hunting tourists their money’s worth. Just an example. I find it all very seedy and dishonorable to the memory of the men who were killed so that this country might live. It’s not just Gettysburg though. It’s every ghost tour in every city exploiting the souls of people who lived very normal lives and deserve respect in death.

Although ghost tours are showing themselves to be good for local economies, I don’t see much value in the field of paranormal research. Those of us in the field are never going to be taken seriously as long as there is this element of circus freak show involved. The same could be said for some “paranormal investigators” out there who treat it more like a social club than a research endeavor. Note: I said some, not all. The serious lack of respect for the dead and the circumstances of life and death is becoming worse as “ghost hunting” becomes a bigger fad. I have seen it with my own two eyes. The scientific research is extremely important when it is explained beforehand to the entities but science only goes so far. Science is not helping the trapped souls find their peace. There is an element of selfishness in all areas of paranormal interest in that most people seem to not care about the spirits anymore once the evidence is collected or the trill has been achieved. If I was stuck somewhere, I would want help.

In my work as a medium, I have several guidelines about the way I deal with spirits. I never conjure, summon, or hold seances. I find those practices to be dangerous and disrespectful. To me, conjuring, summoning, and seances are no different than the act of making kissy noises to bring your dog to you and then find yourself shocked when the dog bites you. I simply open my senses at the beginning of a session and whomever is meant to come through will do so. When I have to ask for signs of a presence, I explain why – that we are trying to find out if they are there and if they need help. My goal in paranormal investigation is to bridge the gap between the living and the dead, and that encompasses scientific evidence collection, assisting people in communication with loved ones, and assisting spirits in finding peace. In none of my three goals is there room for ghost tours or poorly conducted ghosts hunts for the cheap thrill of getting scared or having fun. Ghost tours don’t fit into my moral compass. If that makes me an old fuddy duddy, then so be it.

Update on October 29, 2012.

I was just going through my old blogs today and found this one. I got curious and searched ghost tours again to see if the epidemic is still spreading out there. Like the plagues of old, ghost tours are still raging on strong not only in America but in the United Kingdom and Australia as well. There weren’t so many ghost tours across the pond the last time I looked over a year ago. I’d like to say I’m surprised but I’m not.

For the most part, I still feel that the majority of ghost tours are exploitative of the honored dead and are harmful to paranormal research in that they draw people to the field who have no experience and then present themselves as experts. However, I have noticed a slight shift in the ghost tour industry of late. Several friends of mine have inserted themselves into those jobs in order to ensure that things are presented responsibly. I have one friend in Ohio who is both a historian and a medium who works in her local historical society and now also works with a ghost tour near her too. Someone like her who really does know what she’s doing has great potential to lead tourists through such tours in a manner both respectful to the dead and educational and entertaining for the tourists. I have another friend who is also very well-versed in history and paranormal research who may be joining one of the ghost tours in Charleston. These people helped me realize by their example that it’s not necessarily the ghost tour industry that I find so upsetting – it’s the inexperienced tour guides doing it either for the wrong reasons or simply because they don’t know any better. The solution appears to be not totally ending ghost tours but getting knowledgeable  experienced tour guides hired who are both educated in local history and paranormal research.

I am a woman of action. Next year, I plan to see if Oakland Cemetery by my house will have me as a tour guide for next year’s Halloween ghost tours. People with local knowledge and experience in paranormal things should be reaching out in the community to help tourists understand the truth.

Read More