Individuals: Part 27

late in the evening the noise from the television tries to keep me company. It promises me all sorts of things from a better body to better children to a pain free existence and a larger penis. Useful right? But what it doesn't do is keep my attention or give me any hope for the sanity of humans.

My pain is immense. I fear that my tolerance is either waning and I am feeling all that pain I have buried deep under adrenaline and endorphin naturally released through sex and anger. I teeter between those two, for those new-comers just getting involved in my world. Or if it isn't a matter of my tolerance waning, then it means my pain is increasing and I am not getting better anymore. It scares the shit out of me that a woman so young can hurt so much. Child birth, naturally, was orgasmic compared to this. And yes, I know a lot of you feel pain as well, and a few can relate and most all will tell me that "surely I am exaggerating" but I assure you that I am not. My vaginal opening was stretched to the diameter of fourteen plus centimeters and out popped a very sick, bluish, baby girl who suffered immensely the lights in the NNICU and only seemed to subside in the evening when the sun went down and the late shift came on, skeleton shift, and most lights were turned out as most "humans" were sleeping. It was beautiful except the sick kid part, drugs (not my own either-you'd be surprised what can pass through an amniotic sack when you are in a marriage and making love to the man who you are married to and what he was putting in his body on his way home from work so as to hide it from you), and I remember that temporary feeling of loss and coldness when my belly was emptied of that tiny little baby. Eight pounds and five ounces seems like much to most but to me she was small and lean and fragile. By the time we took her out of the hospital she had lost over twenty-five percent of her weight and that was IN the hospital under the care of trained professionals who were supposed to help her thrive in her fragile state. Imagine that! Medicine fucking up? How dare they?...anyway, we brought her home and once there in my dark world, even then, she began to do well and she ate hungrily from the tit every hour on the hour and she grew. I have no bad memory of the birth itself. It was beautiful.

Two weeks later I needed to get two wisdom teeth removed. I was told I would require pain medication and I warned them it was not my wishes, as I had warned the hospital. I didn't want to taint her breast milk. The hospital ignored my pleas and gave me a mild medication at the encouragement of my child's father and against my wishes. And now, I was afraid they would do the same when removing my teeth. They decided to strap me to the chair. I was glad. I left Lobo in a carrier up at the nurses' station under the watchful eyes of trained professionals while two grown men and one muscled woman held me down as they broke my jaws (upper and lower) to remove two impacted teeth. I won't lie. It hurt like a mother fucker and when I left the place with a mouth full of gauze I drove straight home with my foot almost burying the needle to the speedometer and placed her in her crib with her doggie and a small bottle of sugar water propped on a pillow so it wouldn't fall. I went into the master bedroom and lied down on the double bed willing my feet and arms to stay in the four corners and stared at the ceiling in wait for her father. When he got home he knocked on the bedroom door. I ordered him to take her and enough supplies and formula to get through forty-eight hours and to take my little girl to my parents. I planned my dentist trip for his friday morning-his last work week day. He went to my father's. He, for once, didn't question me as I bit through clenched teeth trying not to scream or cry or lose my cool. The house went dark and I fell fast asleep. Nightmares plagued me and guilt. I woke up every thirty minutes to rinse with salt water followed by straight Listerine (the yellow kind) and to express my breast milk and freeze it into little one ounce ice cubes. I called my dad and asked him to send Stephen home to retrieve them as I did not think it fair she had to suffer with crappy formula. She refused to eat, the little booger, until daddy brought her the "sweet stuff" and I could sleep better the second day with a little less guilt on my shoulders. The pain I felt between the teeth and jaws was nothing compared to the chronic pain I feel day to day now.

I do not take medication for pain. I have in the past but didn't like the side effects ranging from dry mouth to eye ickies and yeast infections to irritability. In most cases it wasn't worth taking the edge off only to feel that edge overwhelm you again some four to six hours later making you crippled to and dependent upon chemicals to get through day to day. Now and for the last decade I have refused pain medicine. The more the pain persists the more I refuse medication and I often wonder about my decision and my quality of life over these years. Keep in mind my genetic disease had not started to deteriorate me as fast as it has this last decade. I lived by night hours all the way up until she was three. I never really suffered the traditional ills associated with this. When I met her stepfather, I decided to live a more normal, human existence in keeping with the normalcy he expected and the rest of the world as well as her school was to expect but still not knowing why I was so different and why no one else seemed as discomforted as I had. I never really told people much about pain for fear of being made fun of and ridiculed for my "weakness" and my complaining. I would simply explain to them that the sun and I had an agreement to stay as far away from each other as possible. I didn't know it wasn't just the sun that hated me then, but I suspected as much because most bright indoor lighting had the same itchy, fiery, thrashing response.

Can you imagine how difficult it is to have a nervous tick and be continually bombarded with things that bring grievous pain and not flinch? I don't know whether to be ashamed of my fear or proud of my fortitude but I will tell you this, not flinching is an ART FORM! It became humorous and novel to try and tickle me. I am ticklish but good fucking luck when I am secure on "twitchy lock-down" and am in pain. I would never flinch. Even if you made me laugh, and laughing was always more of a grimace, even as a child, as I have noticed by old photographs still floating about the family coffee tables.

But now, I am hurting more this week than last and more last than the week before and have been trying to not "flinch" again or complain. People do not understand what they cannot see, if even they have the documentation right in front of them. I don't know how many people I have explained the dynamics of this disease to who still forget I can't go out on a date in daylight hours and trips to amusement parks, beaches and fairs before sundown are deadly. I feel ignored by people who are supposed to love me and have my best interests at heart when they say callous things like "Well you go out in the day to your doctors and seem fine, I guess I'm not worth a little discomfort for you to spend time with me!" and then punish me or pull away from me as if I deliberately was sick to make their life miserable. Yeah, that's it. It is all my fault. It is why my mom tried to kill me. In her words: I never shut up and stopped crying from the minute the sun came up until it went down and I MADE her feel inferior as a parent and she figured I was SOOO miserable that I just WANTED to die! (Yes! I am STILL angry on that one-wouldn't you be finding out they knew you were sick and did nothing and then punished you on top of it as if the devils themselves had placed you here just to fuck with your family and your "lovers"??!!??!!)

So I hurt. I don't know how long for and if it will subside. I don't know if I will finish my book or make love again or be able to ride my shiny new mountain bike (2 yr old Christmas gift to myself to get exercise for the bones that keep breaking-even still) one time. I don't even know if I will make it long enough to finally settle a lawsuit brought on over five years ago or to see Lobo graduate. All I know is it hurts just to get up to pee and I find I am sleeping more and lately, blacking out for two to three hour increments with no recollection or dreams and only disorientation and significant head pain upon awakening. I am worried, people. I am worried that I will go sooner than the time I was lead to believe I had left. I was told I wouldn't barely make a half a century. I wasn't supposed to have these last ten years, but I fought. And now may not even have the next ten because I am too tired. Life has no quality in it right now and only a sense of duty and loyalty to my daughter's childhood and academics. She will be eighteen in less than three years. Is that all I have left? Will I even have that much? Can I fuck over fate again?

Sadly I have no answers and don't want pity. I want understanding. I want people to teach their children and grandchildren to not poke fun at the fat lady at Walmart. I want them to teach them to learn and like learning and how horrible the disease of ignorance is compared to what I go through. Knowledge is what strips away the lies and brings to "light" the truths. Myths of my ancestral past are nothing but ignorant tales of an unlearned species (you-no offense but 'tis true) from four-hundred plus years ago. Now science is catching up but the people refuse to read the writing on the wall. I do nothing in my day. I read and surf the net and write and socialize with far away peoples I dream of meeting for coffee and pie or far away men I would love to teach a trick or two who think they know their way around the organs of woman but it has been proven scientifically that over eighty-five percent, when asked to identify the basics on a chart, cannot get them right. I dream of a companion and lover who can see the royal queen inside and not the hunchback who is afraid to look people in the eye unless she is speaking directly to them and awaiting a response because she is tired of the rude stares and disgust by their prejudgment. I dream of a painless body and existence where I dont' have to see another penis enlarging commercial or another video princess flashing her cooch at us all. I dream of grandchildren I may never see. Tearfully tonight...~mobe's love to her all and her to her loves.