Wednesday, January 25, 2012

Other Worlds and Escapism

Other Worlds and Escapism

I find that during a bad migraine, I tend to escape into other worlds- worlds of words or even television worlds. They take my mind off the pain- for a little while at least. I also think that it is a coping mechanism- and this is true for many migraneurs. Lewis Carrol wrote Alice in Wonderland while dealing with migraines and smoking opium in Oxford. Other famous writers have done the same.

So when the pain becomes too much (and I am on speaking terms with the English language), I find myself picking up a book and escaping into another place, another time, and another world. I realize that this is probably one of my oldest and best ways of coping.

So here is a list of favorite coping books:

Harry Potter- the entire series

Chronicles of Narnia

The Aubrey- Maturin series by Patrick O’Brien (or anything about British Naval History)

Bernard Cornwell- I particularly enjoy his Saxon Chronicles- if you want a good story about how England, as we know it came to be- read it.

Bedlam’s Bard by Merceded Lackey

Anything by P.G. Wodehouse

The Spellman Files by Lisa Lutz.



I will admit that I generally like the fantasy genre.  I also love history.

Pretty much any light mystery will do as well.

So there you have it- my list of books to read when you have a headache.

I will also say this. I blame my father for this addiction to literature. He raised three children to love books. Unfortunately, his bill for books at Borders, Amazon, and Barnes and Noble has always been high. But I suppose he would rather have us reading.

Saturday, January 14, 2012

AHDA Headache Petition

The Alliance for Headache Disorders Advocacy has started a petition to push  federal funding to increase research and new treatments for migraine and headache disorders.

The petition link is here: http://www.sciencenews.org/view/feature/id/337574/title/Head_Agony

More information about this petition can be found here: www.migraineadvocacy.org

Please read and consider signing the petition. Migraines and Headache disorders not only effect the sufferer, but also family and close friends. So, please ask family members and friends to consider signing as well.  Thank you.

Go with God.
sconesail

Sunday, January 8, 2012

Liability

Liability

Liability – 1. Something for which there is an obligation, usually a debt. 2. A drawback or hindrance”

I have begun to hate this word. Over the past three years, I have seen this word twisted and used against me or others with invisible disabilities.  In my mind, it has become synonymous with fear and banishment.  I have also discovered that there is a right and a wrong way to approach the problem.

The Wrong Way

1.     I walked into the cardiologist’s office for an appointment and as I was signing in at the desk, I fainted. Every patient over the age of 70 jumped up to help. I came to with several pairs of eyes staring at me; one of them was holding my head straight. Two had canes and as my mother approached, they said “Who are you?” My mother replied, “I am her mother and a physician," at which point she was allowed to pass. What baffled me most though, was the fact that it took at least five minutes for a nurse to come out, but about three for the office manager to ask if I was going to sue them. In this case, liability won out over patient care.



2.     For several months, my roommate and I were helping out at the ESL (English as a Second Language) classes at her Church. I was upfront about the fainting. I told both the director and the students. The students never seemed to mind when I fell on the floor dropped to the side and came to in a few seconds.   However, one day, when I was fainting some, I pulled a chair next to me to fall into it. This is what I do at my parents' house for dinner; placing chair next to me simply allows me to fall into the chair instead of onto the floor. One day, another volunteer, came over and asked to use the chair (I had just fainted.) I said, “No, I am sorry, can I please keep it” He then tried to grab it, and my roommate proceeded to explain why the chair was needed. And then, several students simply put their bags in it and “saved the seat for a friend.’

About two weeks later, I got up in when the students were changing classes to get a cookie and I fainted. I explained that I was fine, that this happened all the time. My roommate also explained this. One of the volunteers then said “Well, if you faint so much, you shouldn’t be here.” I told him, “Well, sir, if I didn’t stay involved with things I wouldn’t have a life and that is not a solution.” Another volunteer then said “But you could hurt yourself.” I said, “I already have, but I can’t stop living. I faint just as much at home as I do here.”  I went outside to compose myself and my roommate explained the situation loudly. 
The female volunteer then went to get the director of the program.  She didn’t ask what happened. She got mad at my roommate when my roommate essentially said that this was discrimination. The director continued to yell at us, all the time saying “You aren’t making a scene here.” As we walked to the other room, I fainted. The director said “Get up!” I tried to get everyone to be quiet- hoping that she would listen. My roommate and I tried to tell her what happened.

She replied “It doesn’t matter what happened.” She refused to listen to anything we had to say.  She went on to say, “This is it, no more. You are not welcome!”

My roommate then asked, “Were you lying when you stood up in front of the congregation and said that “anyone who wanted to take part in this ministry was welcome to.” The director responded “Well, I didn’t mean people with problems.”

“I have just been told that I cannot come back to a program because I faint and I do not think that is ok,’ I replied.

The director said, “You cannot come back to this program because, for whatever reason, it causes commotion.  We can’t have you falling out in there. It scares people.” We pointed out that the students, who were benefitting from the program did not mind, She then told us to leave or she would call the police. (Never mind that it was church property and that we were not doing anything except volunteering.) It was as my roommate said discrimination in the name of the Lord. Personally, I wish she would re-read the Gospels.

          I eventually met with the pastor who suggested some other programs to participate in- including  one along the same lines, but under a different person. I am hoping that this will be better.



The Right Way:

            When I lived on the other side of town, I would frequently shop at a particular grocery store. I also fainted many times, and it usually happened in the back of the store. The people were very nice and would usually bring me the motorized cart that people can use if they have mobility problems.  After I fainted in the back for the fifth or sixth time, the store manager said, “You know, instead of falling, would you please just get the motorized cart on the way in. This way, we won’t have to worry about your injuring yourself in a fall and you wouldn’t have to wait for help. It would be better if you didn’t walk upright, because we don’t want you to get hurt.” This store kept a customer by offering a simple solution and not saying, “You are a liability.”



I hate the fact that this disease makes me a liability- that is scares people.  Falling down 5-20 times each day scares me too. For the past three years, I have done everything possible to stop it, but I can’t stop it. We are not really sure what this it. It has baffled some of the best minds in the country. But, I refuse to stop living because of this. I am going to continue to volunteer. I will try out the new program, but if that doesn’t work, there are other places that will work with me. I don’t know why I have this disease. I do know, that for whatever reason, I have it, and the only thing that I can do is pray, follow Christ and know that he has made me and he will see me through this.
You may not be able to see my disability, unless you see me faint, I appear to be just your average girl. However, in many people's eyes seeing is believing. So when people are confronted with the visible signs of this, they seem to have trouble dealing with it and will do anything not to deal with it. I just wish they would realize that between migraines and between falls, I am not only normal, I have a great deal to offer. And I will continue to do so.
Go with God!



           

           

       





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