 This letter just goes to show how important it is to have love and support from a loving caring family. Jen apparently did not receive this. Is this what you want for your family member with FM or CFS?  I wrote this weeks ago, late at night, on paper. It's undedited because if I go to edit it I won't ever send it. But I want to send it because there was a reason it came out of me. It was something needed to be said, and not to myself. I want you to know you can send this to anyone you want. Do me a favor and remove my email address from it before you do so. I am not saying it's such great writing that you should want to send it; I'm just saying that if you do think that this is something you'd like to pass on, you can. It's long so please read the whole thing so you get the point. I have been sick with CFIDS and FMS for an unknown number of years. I say this because I was diagnosed with depression as a teenager, and, even before that, I had many symptoms of CFIDS. But my worst period of physical illness has been the past six years. I went from being able to work full time jobs that required me to be on my feet and take community college courses at the same time, to, gradually, being unable to work at all or take classes anywhere. My whole life I thought my future rested on a college career. I have always wanted to go to college, not just to earn a degree, but because I love learning and am bored when not in school. I thought I would go to graduate school too. I thought I might become a professor. Two years ago that almost seemed like a possibility when I was admitted to Smith College and got a huge scholarship. In the end I was far too sick to go. That will forever be one of the biggest disappointments of my life. Instead of ending up at Smith, I ended up, last year, in a homeless shelter. You see, besides being sick with CFIDS and FMS, I also come from a background full of abuse and a family that gave little support. I have been dealing, for years, with depression, PTSD, and a dissociative disorder, as a result of the abuse. I have also had an eating disorder which nearly killed me as a teenager and never completely went away, and addiction to self-mutilation (cutting myself) which I still battle with today. Suffice it to say, an incident of abuse in my family led to me becoming homeless. I had been denied Social Security benefits and never appealed because of all the horror stories I heard about people with CFIDS trying to get it. I should have reapplied, but, due to everything else I was dealing with, I never garnered the motivation, energy, and ability to concentrate enough to do that. So I ended up with no income, and, after being kicked out of my grandparents' house, nowhere to live. While at the homeless shelter, I spoke to a social worker from the county department of social services about my health problems, the abuse, and my situation. She never did anything to help me, although I was there for almost two months. I spoke to a nurse, too, who seemed to want to help but couldn't really do anything as her job was to check the basic health needs of people at the shelter and I had a serious chronic illness. During the first four months of this year, including my two months at the shelter, I ended up in emergency rooms seven times. At the shelter this happened because I was not allowed to rest as much as I needed to, and was forced to be chores I as not physically in any state to be doing. I got notes from doctors at emergency rooms and a free clinic saying I was not to be doing such work, but the shelter employees wrote up violations on me anyway if I did not do the work, (enough violations get you kicked out of a shelter). I spent countless hours typing letters at the public library to the shelter director explaining what the Americans with Disabilities Act is to her and how she was not allowed to violate it. That - and the help of a pro-bono attorney I talked to every day because she was investigating human rights abuses at this shelter - kept them from forcing me out until I had been there for 60 days. Then I was forced out under the premise that my time was up. My social worker was known for being one of the most careless employees in the Deptartment and she proved this right when she did nothing to help me find a place to go. She knew my only options were living with my grandparents, although this grandfather sexually abused me as a child and it is traumatic for me to be anywhere near him, or to sleep in my car. For a couple months I lived with my grandparents, to eat and have a place to sleep. That was a huge mistake. Then I started living out of my car. I was an emotional basketcase with PTSD, panic attacks, dissociation and severe suicidal depression. I was also severely exhausted and getting no sleep or health care. Shortly thereafter, my angelic friend Christa, who has CFIDS herself (which is how I know her), arranged for me to move into an apartment where she used to live in a nearby State. Her former boyfriend and stepbrother allowed me to live here for many months without paying rent. I left the State my grandparents are in, and left most of my possessions there. My time here has not been easy. The period of living with that abuse brought more severe flashbacks than I ever had before in my life, and put me into a state that is hard to describe. I spent this past November, January, and February in psychiatric hospitals. I attempted suicide. My eating disorder and self-injury addiction returned. I still have not gotten Social Security benefits and did not have money for food or anything else most of the time, until two months ago. Two months ago, I got a job. This job is why I am writing this article. This job is one where I do not have to be awake in the morning or stay on my feet. I do not have to lift anything, type, or do any other repetitive tasks that are painful due to FMS. I do not have a regular schedule that I am expected to adhere to; I make my own hours. And I make much more money in this job than I could ever make in any of those other jobs which I am physically and psychologically unable to do. This job gets me enough money to pay for prescriptions and food, and rent so I am able to keep a roof over my head. It enables me to pay for taxi cabs so I can get around (standing to wait for a bus is often impossible for me; I fall to the ground or faint). It enables me to pay the therapist I just started seeing. These are the good aspects of this job and the reasons I am doing it. The other side of the coin is that this is a job that takes away my dignity as a human being, objectifies me, puts me at great risk for rape and at risk for beatings, makes me ashamed of myself so deeply I don't feel like I have much of a self anymore, and also could get me arrested and sent to jail. I will not say anyone is forcing me to do this job, because they aren't. But if I was not doing it, I would be penniless, without needed medications, without food, and homeless right now. I know that from experience, not just my imagination. I have no other way to survive. And I am not even going to blame the government because I do not have S.S. disability benefits yet. I know I need to fight harder to get those benefits. But the fact is that, even if I had them, I still would not have enough money to live. It would not be enough to cover rent anywhere here, much less other expenses. And the waiting list for Section 8 housing, the last time I checked, for a single person with no children, was 5 years. And I am not writing this to complain about my own situation. I found a statistic once that said disability benefits were not enough to cover rent on a one bedroom apartment anywhere in most of the 50 States. There is something wrong with that. There is something wrong when you live in the so-called Land of the Free and you are imprisoned by poverty if you have the misfortune of becoming sick. There is something wrong when you cannot get therapy for all the issues you have as a result of sexual abuse, unless you are rich or have the luck of an extremely rare insurance policy which covers mental health benefits at a reasonable rate (most do not). There is something wrong with the fact that sometimes, just in order to survive, a disabled person has to sell her soul to the devil and give up whatever self worth she has for money. There is something wrong with the fact that I have never heard anyone with a story quite like mine because every woman who has one is probably too ashamed to tell it or if she tells, no one listens, and the story is never published. I have heard about all the girls who resort to the sex trade for drugs or to pay for college. I have never heard of someone doing it because she has thousands of dollars in medical bills to pay and no physical ability to earn a decent income any other way. So I wanted to tell this story. Because I think I am speaking for more than one. I think I am speaking for all the disabled women with financial problems in this country. I think I am speaking for disabled people. I think I am speaking for women. And I am also speaking for me. I hope you hear me. And if you do, and you want someone else to hear this story, feel free to pass it along. Jen Update on Jen. She is no longer doing the escort service but has turned it around and is offering hope to others who may be in similar circumstances. Back  You hear a lot about abnormalities of brains from various medical conditions. What about environmental conditions? I really think environmental conditions are a major factor also. |