Individuals: Part 22

for the last several days my sleep has been affected by my nightmares. I have tossed and turned in my upheaval and had an early day of it yesterday. I had a court hearing, closed, in front of a judge and a reporter along with my two advocates.

I had to spill my life's history and not just the medical aspect either to them. I had to go into infinite detail of the horrors I have faced to substantiate my mental instability and to explain my genetic disease. I found it most funny that when discussing this issue they have problems, just like everyone else, in understanding my needs and what ails us. They, being the judge and a vocational assessor via telephone, have to decide my viability for working based on my medical history and my mental one as well. They had a tremendous time determining what is considered safe levels of direct and indirect sunlight/daylight/artificial light to a sentient being not able to be in any light. It was pointed out that I was in light to be there and I smiled wryly and asked "Do I have any other options?" I also pointed out the world was not designed for me and my daughter and the fact that my poor state of health and my doctors' refusals to allow me to return to work has put me in the "poor house" and homeless and in a violent situation that is stressful to say the least. I guess three strokes in five years wasn't good enough, they can prop me up at a desk in absolute darkness to answer phones between the hours of sunset and sunrise and get me home before the sun comes up. The issue is they feel I have already been in the light so no harm no foul in their eyes. They cannot see my pain, they cannot see my damaged bones and liver and cannot feel what I feel. So like all other people who think they are gods but are as ignorant as new babies, they deem me as "well"and capable...well, they're trying to.

My case is most unique and unprecedented. There are others like me with erythropoietic protoporphyria but the majority of them have been under a doctor's care for the bulk of their life. Some even wealthy enough to afford the special film for the home's windows and the car's too. Some wealthy enough to afford the special cooling and light blocking clothing manufactured here in the US. These people have had their whole lifetime to understand their disease and to get used to the way of life that is a necessity for us. I have had a year and a half and Lobo a year. Even though I have tried my best to avoid lights of all sorts-mostly sun, I just was not prepared for the necessity of it and the deathly possibilities should I refuse. We are still adjusting to the medication regimen and the avoidance and dressing from head to toe in the summer and planning my day around my disease. I have always been sick and for the most part avoided the sun, but now I know it is a matter of life and death, so the need to do so is far greater than it was two years ago.

The part I find funny is the phrase about my being out in the sun to get there and being under fluorescent lights while there. If a person cuts their finger off it doesn't make it okay for their occupation to take the other seven fingers because well, they lost one and are doing fine! Because I am forced to go out in the sun to bank, go to court, do other business and seek medical aide then they are trying to determine what is acceptable for me to do via light when it has been prescribed and explained that NO light is optimal.

The unprecedented nature of this is in the fact the hearing took far longer than was anticipated because though they have all the facts in front of them they still cannot wrap their heads around the first and foremost fact, and that is we DO exist. It challenges people's fundamental beliefs and their ideas of mythology as well as their personal religious views. They will be taking from six to eight weeks to further investigate what they think my needs are and substantiate my going back to a job I no longer have, without medical clearance from my psychiatrist and other medical professionals, to ease the burden of the taxpayers(I am one)and spare the government from having to take care of an already sick and dying woman. Life is not good in mobe's perspective and it doesn't look to be getting better any time soon. I wonder who else in this world has to jump through the hoops I have had to in order to live and raise a child alone?~mobe's love to her all and her all to her loves.